Ep. 99: Family Planning When You Have a Medically-Complex Child w/ Amanda Griffith-Atkins LMFT + 13 Special Guests




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When you have a child with a medical complexity or disability, so many things get flipped on their head. And one of those things is family planning. Something that may have seemed relatively simple and straightforward becomes muddled and complicated.

We wonder—rightfully so—if we have the mental and physical capacity to care for an additional human being. And if we choose to move forward with adding to our family, how can we endure the anxiety that would likely flood us during a subsequent pregnancy? And further complicating matters still, what if we’re a carrier for our child’s condition and could pass it on to other children as well?

In this episode, Amanda Griffith-Atkins and I tackle these very reasonable concerns and include the perspective from 13 parents, each one with a different decision and reasoning behind it.

Episode Transcript

Amanda Griffith-Atkins  0:00  
We don't get to make this decision joyfully and easily the way that it feels like maybe some other parents are able to do it.

Madeline Cheney  0:10  
Hi, you're listening to The Rare Life. I'm your host Madeline Cheney. Today I am joined by Amanda Griffith-Atkins to tackle the topic of family planning when you have a child with a disability or medical complexity. As many of you will recall, this is our third episode with Amanda Griffith-Atkins. She has a son with a rare condition and is also a licensed therapist. And obviously, I just love her insights. You can find links in the show notes to the other two episodes that we've done together. We included audio submissions from 13 different listeners. We wanted to keep this episode as diverse as possible, so we can kind of dissect every angle of the topic. As you may have noticed, this episode is long, so much longer than any other episode we've done before. And it's also kind of a lot. So if partway through, you kind of hit your maxm, I recommend pausing it, taking the time you need, and then when you feel ready, going back to the episode, to finish it. Just make sure you don't miss the last like seven minutes or so of the episode. Amanda and I wrap it up with some really important things to keep in mind. Guys, I just love this episode. So let's dive right in. Hi, Amanda, welcome to the show.

Amanda Griffith-Atkins  1:37  
Hello, I'm so happy to be here.

Madeline Cheney  1:40  
I'm so glad to have you back. You're my favorite repeat guest for the third time. I am just super honored to include you ans your insights in tackling this important topic of family planning when you have a disabled or medically complex child, because, you know, there are just a million, a million different factors that go into deciding something like this. And it's such a personal choice. And so my goal with this episode really is to include, you know, as many voices as we can. We couldn't include everyone, but we have 13 parents that are going to weigh in on their decisions and what they're doing in their life. My hope is that, you know, as we listen to those parents, and as you and I kind of like, given our two cents of what we hear from them, that parents listening, hopefully, you know, if you're at a place where you're not sure about whether or not to add to your family, and are you know how to do that, it would be so awesome if some of you listening can kind of come to some conclusions and have some moments of clarity in hearing these insights. But I also, just like any other episode, my main goal for this episode is really for everyone and anyone who is vacillating with this big decision or has in the past or might in the future, for you to know that you're not the only one. Like this is a super complex topic. And so I want you to feel that solidarity while you're listening. So Amanda, I'm just so grateful that you are joining me today to tackle this episode.

Amanda Griffith-Atkins  3:09  
Thank you. I know for me, when you brought up this topic what really stuck out to me is just, like you were sayin,g so many different situations that disability parents are in. And I know for me personally, there was just so much anxiety around subsequent pregnancies. Asher was my first, and Asher is now 13 and has Prada Willi syndrome. And I have two other boys. So I have three kids all together. And I know for me, pregnancies two and three were some of the hardest, darkest days of my life. Because as a disability parent, you have this awareness that not only could my child potentially have the same syndrome as my other child, but now our eyes are open to the literal thousands of things that can happen in pregnancies. As rare parents, we know that there's so many diagnoses out there that can change our lives. And when you have just a little taste of that reality, you can never unsee it, right? And so I think there's just that awareness that so many things can happen. And the thought of a, quote unquote, normal pregnancy feels impossible. And even if it is a completely textbook healthy pregnancy, so many of us have huge anxieties and fears and just think worst case scenario. And so I think it's so important to talk about this because like you said, number one, simply helping parents come to a decision. Maybe decide, okay, yeah, we are going to try for another child or okay, we are going to use fertility intervention to help us. But more importantly, I think is you're right, that parents feel less alone, that they're able to acknowledge the anxiety that they're feeling and the fear that we're carrying about, all of the many things that could happen. And, you know, we don't necessarily have a quick fix for that fear. But I think just knowing that you're not alone, and that there's so many people out there who are experiencing this with you just helps us feel like we can do it.

Madeline Cheney  5:14  
Totally. Yes, that solidarity. I mean, I say this all the time, and you do too. But like, the power in that is so impactful. And I'll add on to what you were saying too of like like the fear of... I mean I haven't been, well, I've been pregnant many times since Kimball. I have not had another child.

Amanda Griffith-Atkins  5:32  

Madeline Cheney  5:33  
And I can imagine, like those terrors and those fears of oh my gosh, like, now I know. Like you say, the thousands of different things that could happen, even if you're not a carrier for your child's condition. But there's also, right, this other side of it of like, okay, so say I have this child, and they are, you know, non disabled totally healthy, then what, right? Like because then you're still, you're raising this child alongside their sibling who often has a lot more needs. And so I think also just measuring that bandwidth, and like, am I capable of this, you know, of adding on another child to my already full plate? And like you say, like, we don't have the answer for families. This is a very individual thing. But yeah, I hope that clarity comes either through this episode or in the ensuing weeks, it maybe simmers? Yeah, with that, let's dive in. 

Amanda Griffith-Atkins  6:22  
Let's do it.

Madeline Cheney  6:22  
So let me kind of introduce the way we're going to do this. So we have 13 parents that we're using their submissions of audio, of what they've decided to do family planning wise, why they made that decision and advice for others. And I've kind of separated this into three different categories of parents. So we have let me really quick explain what a carrier is. Someone asked me, what do you mean by Carrier? When I asked on my Instagram Stories. I'm like, Oh, my gosh, this is such a big part of my life. I didn't really think to explain it. So as some of you know, I'm a carrier for my son's condition, which means I gave that to him. And I did not realize before he was born, that I had this condition. It's x linked, so I have no symptoms for this, but I passed it on to him. So I'm a carrier for that my daughter could be a carrier, we don't know. And so I've one in four chances of having another boy with the same condition. 

Amanda Griffith-Atkins  7:18  
Is your husband's not a carrier?

Madeline Cheney  7:19  
No, and so there's, as far as I know, there are two different ways to be a carrier, I'm sure there's more than that. But the ones I'm aware of is either the mother passing it to a son, like x linked condition. And then both the mother and the father being carriers. And that being the only way to pass that type of genetic syndrome on and we have a listener who submitted an audio and she is in that category where both she and her husband are carriers. And that's how they have a child with it. But basically, the essentials of the basics is there are the carriers, like where you passed it on to your child. And there are the non carriers where it's known as de novo, right is the term for that where it just happened like in pregnancy, and it was not passed on genetically. So we are going to start with our submissions of people who are non carriers and have a couple of perspectives from that. And then we're going to move on to the category of people who are unknown. And this is one that I didn't even think to like broadcast is one of the options of like, yeah, there's a lot of people out there, and a lot of you listening who don't know, if your carriers, and especially when it comes to rare syndromes and diseases, there are a million different factors. So sometimes we don't know if we're carriers. And so that will be our second section of parents, and then we'll wrap up with known carriers. So

Amanda Griffith-Atkins  8:37  
if somebody is an unknown carrier, does that mean that they just haven't done the genetic testing yet? Or does that mean that there's not a genetic test that can? 

Madeline Cheney  8:45  
I'm trying to think through the different submissions for that category, but I think for most of them, they said that they don't have that genetic testing available to them. Like it's kind of like the doctors are like, we don't really know if it caused it or not, or maybe their child doesn't have a diagnosis, so they can't test for that gene. So I mean, it's tricky, right.

Amanda Griffith-Atkins  9:04  
I'm glad you included that, because I think that what an area of mystery, like, curious to hear what those parents experience is. That's great. Yeah.

Madeline Cheney  9:12  
So let's dive in with our non carrier category of parents. Okay, first, we're gonna hear from Marci.

Marci Dunning  9:20  
My husband, and I honestly have no idea what we're gonna do. Before we had our daughter with a disability, we wanted more kids. Now that we have her it's a hard decision to make to decide if we have the patience and the time and the emotional stability to add another child to our family. I have no advice on what to do other than to really decide what it is you want to do and then look at your life and also decide If you have the support system in place to help you do that.

Madeline Cheney  10:04  
Thank you, Marci. I just love including your perspective in this because I love that you submitted saying, we don't know what we're gonna do. And I think that there's so many people, and especially people listening right now that are in that boat like, I have no clue. Previously, this is what we wanted. Now, I don't know, isn't that just so typical for like this life in general, when you have a child with disabilities, where you're all of a sudden, like, well, I expected this. That's not happening anymore. This completely different reality is now ours. And so what do we do with that?

Amanda Griffith-Atkins  10:37  
I love what she said about patience, time, emotional stability, and support system, which I think she nailed it. That's exactly the things that you need to decide, can I add another child in the situation? And she didn't use these words. But I heard such grief in that because you do really have to take an honest look at your bandwidth and your life and say, can I do it? And I think that's something that parents of typically developin  g kids don't necessarily have to ask themselves in the same way. They do have to ask themselves, but for disability parents, it's amplified so much more, because so much of our attention goes towards our child with a disability. So we really have to be honest about can I actually even handle raising another child? So I really appreciate her honesty? And I think so many of us can relate to that.

Madeline Cheney  11:27  
Totally 100%? Yes. Okay, now we're going to hear from Taylor.

Taylor  11:33  
Hi, my name is Taylor. And my family falls into the adoption category, we adopted our son about two and a half years ago. He was in a NICU for eight weeks before we met him. And gosh, it's been so worth it. But it has come with a weight considering what we're going to do with planning for the rest of our family, because we do believe that we really are called to have more children. But it is so difficult when you really do just feel the weight of what that would mean for other children and what that means for the time that you can give your other children. But I do believe that with more children, we will gain that. We've stepped into this knowing that he would have a lot of medical complexities, I think that we needed at least three years to kind of gain our footing on what this means for our family. So we're coming up on that mark. And we really do feel led, and we trust that God is going to add to our family, we just don't know through biological children or through adoption. So we're open. And I think that one of the biggest pieces of advice for families in a similar situation is to really just lean into your spouse and to trust where God is in their hearts and where he's kind of leading them. I do think that it is difficult to fully grasp what your spouse is going through if you don't have an open conversation about what your family is looking like to them. And I do feel like that is probably the biggest piece of advice that I would give. We're just so grateful to love our little guy. There's such beauty and heartache to care for these little ones. But man, I wouldn't trade it for the world.

Amanda Griffith-Atkins  13:14  
That was sweet. I love hearing her sort of positivity about it. And I think also the component of religion probably really changes things. I think that's really a unique situation. I mean, she used the words like we feel called to have more children. And I imagined in her situation, it sounds like it feels like a direction that she feels really confident about, which I imagine has helped her in that decision. And so it makes me think of people who maybe don't identify as religious in this situation and how just that difference of having the idea of God, a higher power, for Taylor has really helped her to feel like there's a clear path, right? So in a way, I really appreciate that that has helped make this decision easier for her in some ways, because she feels that leading of it right. And so I wonder people that aren't religious or don't have a connection to God or higher power, I wonder how they would feel differently about it. So I also love her advice about really having a clear understanding with your spouse, with your partner about what they want too and so I mean, right we know that that's so important, just across the board, visibility parenting. But especially with family planning, trying to decide how did you envision your life? Do you feel like we can handle more? Like, what do you feel is most important for our family? That gives you an anchor to hold on to, to be like, okay, I'm not in this alone. I have my partner with me, and we're a team and we're making this decision together.

Madeline Cheney  14:49  
Yeah, and I can imagine that that disagreeing on something like that, I mean, even if you take disability out of it, like that's a really big deal, and that can be a huge point of tension with a partner. Like, if you really want more children, and they don't, or vice versa. Like, I feel for those couples navigating that, because, like Taylor mentioned, and you said, like being unified on that front can be so empowering and then taking that away or not feeling that unification. I mean, that's a big thing right there, right, as disagreeing about this kind of thing. But, I mean, while we're talking about that, Amanda, as a therapist, like do you have advice for, and we can't spend too long on this, but do you have like a quick tip for couples that are navigating this coming from different perspectives or points of views from their partner?

Amanda Griffith-Atkins  15:38  
Yeah, I think that's huge. I didn't even thought about that until you said that. That could be a whole other category, right?

Madeline Cheney  15:44  
Like, we can do a whole episode on this.

Amanda Griffith-Atkins  15:48  
And so we disagree on it. But I would say, acknowledge that this is such a deeply personal decision that has so much wrapped in it. And if you and your partner disagree, your partner probably has good reason to think what they think you have good reason to think what you think. And so I would just say, handle, it was so much compassion, and know that family planning is just such a personal decision. Also, I think it could be really helpful if this is such a loaded conversation, probably get in couples therapy and find someone that can help guide you in this conversation. Because I can't imagine having this conversation in my living room, the decision to do we want more kids? L,ike that's going to escalate so quickly. You know, like, what's more personal than that. And so I would say, find a therapist that understands this and get some support around this decision. And also just have empathy for your partner, knowing that your partner is not trying to take away your dream of having a kid or vice versa, but that there's probably actual deep reasons why they want what they want.

Madeline Cheney  16:55  
Yeah, I love that such great advice. Awesome. So moving on to Rachel.

Rachel Bennet  17:02  
Hi, this is Rachel, I'm in the non carrier more children camp. My oldest son has multiple disabilities due to an extremely rare genetic variant that was spontaneous. His first few years of life were just so incredibly scary, you know, and I'm learning so much from the disability community, he's almost 10, now. You know, we're all temporarily abled, and nothing is a given. But to have to confront that as a brand new parent, right out of the gates just took everything out of me. And I didn't want to have another child. I was so scared. I was so scared. You know, me and my husband thought we were going to have three kids. And then I go to him saying, I don't think I can have another child. And that was a really tough time in our marriage. But, you know, time heals, and, a little bit time doesn't help that much, right. And four and a half years later, my daughter came and she completes her family in so many ways. What she's really showed me and taught me is, well, first of all her needs fall within the accessibility limits of our society. And so she shows me all the things that my son doesn't have access to big or small, and that helps me, advocate for him and fight for him and just bring some clarity to why things are so hard. She's also an incredible sister to him. And it's really beautiful. You know, the advice I have is, gosh you do you. It's such a hard decision. It's a sacred decision. It's a personal decision. And you can't do it for anybody else but you and your family. I can't tell you how many times somebody came up to me saying, oh, when's the second kid coming? Or, you know, kids with disabilities really need a sibling. And don't, on't say that, to me. It's such a personal decision, that's really crossing the line. And whatever decision that you make, you don't have to give an excuse. You don't have to give reasons. You don't have to give an explanation. You made the decision that feels right in your bones and your heart and your soul that feels right for you and your family.

Madeline Cheney  19:11  
Don't you love what she had to say? I feel like it that's packed. I was like, how do I respond to this? Rachel knows where it's at. First of all, you do you right. Like all the unsolicited advice that we could get from society? And I mean, like, screw them, right? Let's just say like, obviously, they come well, when they come from people we love. They're usually from a good place, when it comes from strangers, none their business, but whoever it comes from, right, this is a deeply personal decision to make. And you do you. I also just that fear, right, like, let's talk about that for a second because the fear that Rachel talked about earlier years when she was like, you know, we probably can't have more kids. I was thinking a lot about this. Like that fear that we have, because I definitely had that. I mean, honestly, I had that with Wendy, my non disabled daughter when she was first born, she was my first child. I was just completely unglued by being a mom. It was so hard. She had colic. She was crying a lot. I had no idea what I was doing. I was like, rhis is it Juston we're not having any more kids. And I meant it. Well, I knew in my heart might change. But like at that moment, I meant it. I was like, this is so hard, I cannot do this again. And then later, when Kimball came, obviously I changed my mind. When I was pregnant with him and we had this prenatal diagnosis, he wasn't even born yet. I was like, Well, this is adjust and we cannot have more kids like, how am I going to care for this child? And when do you know, it's when you feel you're at your max capacity? And beyond? Right, you're beyond your max capacity. And the idea of adding anything to that, let alone a child is just impossible, right? That's impossible to imagine. And so I think that in that moment with Wendy, and then when I was pregnant with Kimble, and maybe Rachel, when her child was younger, there is this self protection that happens in that moment of this is so scary and so overwhelming. We're not having more kids. And I think that that's a survival tactic. And I think there are many people who obviously that's not just a survival tactic, that's what they decide to do. And that's great. I'm not trying to minimize that decision. But for those of us who go on to be like, actually, I do want more children. I think that in those early days, like, we have to say that to get through what we're getting through. And that fear is just, it's grounded in reality. It's not this, like, oh my gosh, what if this happens, I'm paranoid, like it's a real fear, because we've lived through it, we know it can happen, and it does happen. And so that fear is so valid. And I think that these decisions we make about having more children or deciding not to, I think they're grounded in both fear and love. And I don't think that's a bad thing. You know, like they say, don't make decisions on fear. It's okay to make a decision out of fear. Because, you know, we're trying to avoid more pain and struggle that we've been through. We know it was a very real part of life. So there's my soapbox about, Rachel, I really do appreciate all of your insight that you've offered us today.

Amanda Griffith-Atkins  22:14  
Yes, I love everything that she said, she's such a wise parent. And I, again, with the fear thing, I think so many of us can relate to that. Like I said, earlier, when I was pregnant with number two, and number three, I was, just, my anxiety was out of control. Like I just felt so afraid of the unknown. And I couldn't even pinpoint what it was that I was afraid of, because my husband and I are not carriers. But that didn't necessarily bring me relief, knowing that we're not carriers. Because again, I was like, there's so many other disabilities that are common. And what's to say, now, we're not going to be one in 20,000 with that one, too, you know. And so I think just that fear is so powerful, and you have to decide, do I want to go through nine months of terror and fear and anxiety? Is that worth it to have another child? I mean, most of the time, yes. But also, as we know, the anxiety doesn't end when the child's born, like anybody can become disabled, you know, as Rachel was saying, like, disability can happen at any point. And I think just that fear, once something has happened to us, you just are never the same, you know, and so I think, I love what she said, and just so honestly articulated, how hard it is.

Madeline Cheney  23:34  
Yes. And there's a few more two submissions, in the next section that really touched on that fear as well. But I just love being able to open this up as like, here it is. There's a lot of fear involved in this decision. That's okay. In fact, I can't think of anyone in this situation who does not have some level of fear. And so there it is, there's the fear. Welcome to the conversation.

Amanda Griffith-Atkins  23:55  
You said something really important. You said, if you make a decision to not have more kids out of fear, that's okay. And I think that we need to like amplify that. If you're like, I'm so afraid that I'm going to have another child with a severe disability and I can't do it. So I don't want to have more kids. That is okay. That is okay. And I don't think that we need, yeah, this whole don't make a decision out of fear. There's a lot of things we don't do because we're fearful and that's okay. That's called human nature.

Madeline Cheney  24:21  
Yeah, we don't like walk out into the middle of a really busy road.

Amanda Griffith-Atkins  24:24  
I was thinking the same thing. 

Madeline Cheney  24:27  
Like what do I not do? I don't walk into busy roads. Don't worry, Amanda and I are like super safe when it comes to streets.

Amanda Griffith-Atkins  24:27  
That's right guys. I hope you are too.

Madeline Cheney  24:37  
Look both ways. Anyway. Awesome. Thank you, Rachel. So next we get to hear from one of my friends Meg.

Meg Dawley  24:46  
My name is Meg. My husband Jordan and I have four daughters. I am a non carrier discussing having more children. Our older two girls have no health conditions, our younger two are disabled. At just five weeks old, our third daughter Emily was hospitalized with failure to thrive. I'll never forget when I met up with a close family friend in between hospital stays, and she looked at me and said, no more babies okay. She then looked at my husband and said, don't let her have any more. Okay? At that very fragile time in my life, I felt like someone so close important to me that my kid was damaged and not as worthy to be here as my older, healthier children where. We always wanted four kids and our geneticists told us that at the time, there was no clear genetic reason to not have more children. Despite our friends and families seemingly discouraging us from what is, they would say, adding more to our already full plate. Our fourth daughter Milo was a much celebrated pregnancy. And although my hands truly were full with two preschoolers, a baby, and a 20 hour per day feeding backpack, we were so thrilled. But at our 20 week appointment, we got some unexpected news, Milo had skeletal dysplasia, also known as dwarfism. After Milo was born, I met up with friends as you do when you have a baby. Again, I got the comments of no more Meg, it's time to be done, as if I was an out of control mother recklessly producing disabled children, and I needed to stop because my children had rare medical conditions. This was so hard. My children are not less than other children because of their disabilities. My children are not less deserving of life because of their disabilities. When people ask us how it's going, I can give at least two versions of our life. It has not been an easy ride. And we have years of challenging times coming our way. I would also tell you about the amazing moments like Millie overcoming a feeding challenge or Milo walking and laughing with her sisters, to see the deep character that is being formed in  my older girls, were better people because of the trials we have faced. The advice to others would be to follow your own path. Don't let someone dictate how you live your life based on their perception of your life. We ask that people not set limits on our children based on their disabilities. So don't do it to yourself, either. The genetic components of our story are still very mysterious, and I can only speak to what I've experienced. But I would encourage you to not fear what the future might look like adding another child to your perhaps medically chaotic home. But instead think about the warrior parent, you have become due to your experiences and the love you have in your heart ready to give away.

Amanda Griffith-Atkins  27:17  
And I'm crying. 

Madeline Cheney  27:21  
That was awesome, man. And there it is. There's that fear that we have. That's not it's not unreasonable, right. Like, of having another child with a different disability when you're, you know, your non carrier. And I when I say fear, I mean like now I'm like, okay, that's kind of cringy because yes, Meg is highlighting how that's not the end of the world, right? Like, we love these children. And we've already proven to ourselves, to society, to our children, that we will love them no matter what, right? And that we know that, you know, there are people in Meg's situation rather like I welcome more disabled children, my family happily like an office. I'm not trying to minimize, you know, the probably was hard, but like, there are those people in there those people who said I could never do this again. And I fear that and both are totally understandable. Totally okay. Again, a myriad of lived experiences within the broad umbrella of disability, right, and so as individuals, but I just love how she was able to recognize like, No, my two younger are worth just as much as my two older. And Gosh, darn those friends. Right?

Amanda Griffith-Atkins  28:30  
Yeah, I love what she said so much. And she made a really important point about how going on to have two kids with disabilities, how it's shaping her family, and probably her community and her friends. And just kind of being this really powerful example of how people with disabilities are real humans, valuable humans, and bring worth to the world. And I don't say that in a way that tokenizes them, but in a human way, they have as much to offer as any other person in the world. And she's highlighting how her friends saw it as a burden, right? And said, Oh, you need to stop having more kids, you need to stop having more kids. And she's saying, just because they have a disability doesn't mean that they're bringing down my life. And I love that. I think that's so powerful. And yeah, I bet a lot of people can relate to that, that people in their community, people in their circle, are discouraging them from having more kids because of the assumptions that they make. With that said, is having a child with a disability incredibly difficult? Yes. No doubt about it. It can be financial constraint, it can take a toll on your marriage. You know, people have had to quit their jobs to stay home with it. So it's both sides of the coin, but also I love what she said about it's not something that has ruined my life. And I think that's really important.

Madeline Cheney  29:52  
Yeah, one factor too that I've noticed, like when I was listening to each of these submissions previously, is that one of the factors? I keep saying like, oh, it's so individual is that one of those huge factors is the life expectancy, or the terminal or non terminal nature of these diagnoses? Right? Because I feel like, as I was listening through, I was like, that's a huge part of this, right? That impacts a huge aspect of, are we willing to do this again? Like, are we willing to risk watching our child die or knowing they're gonna die or worrying? They're gonna die? And I mean, I think we've all been in the camp of worrying, they're gonna die, right, but of how that reality and how that's impacted us. And so, again, I'm not trying to minimize Meg's experience. And I think this is an awesome story of, you know, it's okay to have more than one disabled child, that maybe there's fear, but it's okay. But there's that aspect of it as well. You know, this reminds me to have a story in my own life, when I was seen by a fertility doctor to kind of figure out like, how can we help you not have so many miscarriages and that's still kind of...

Amanda Griffith-Atkins  30:57  
That's the next podcast.

But, yeah, during that the doctor was like, trying to push me to do IVF. And we'll talk more about IVF. But he was like, Don't you want to prevent this? And I was like, how, how can you say that to me? Like, don't I want to prevent my son like, and I think that's the thing is, sometimes it becomes the diagnosis becomes our child, right? And so I'm looking at and thinking like, it was just so utterly offensive, and nothing against people who do IVF. In fact, we've decided we are going to go forward that with a different doctor, who's not we're not trying to prevent our son or, you know, prevent this, as he said. I mean, people society, right, it's just this view of disability and medical complexity that is so surface level. Because yes, we're sitting here talking about how we do fear having another child that a disability, right, so we're not ignorant to the struggles that can happen with that. But it's just this like, assumptiv,e simplistic, don't you want to prevent these children? And we know, it's so much deeper than that. And it's so much more personal than that, and so much more human than that. 

Also, if disability can be prevented, right? It's part of life. Yeah, what a controlling attitude to go in and say, Madeline, you have the power to control disability. That is so offensive to me.

Madeline Cheney  32:22  
Well, and I kind of like was being treated like a Meg was. You're out of control producing these disabled babies. How dare you, you know, make more of these children like your son, you know, and that's just like, so painful in so many different levels.

Amanda Griffith-Atkins  32:37  
So I hope that doctor gets a hold of your podcast and can listen to this.

Madeline Cheney  32:40  
 Right? He was a super old guy, I was like, hey, bye, like we're not doing this.

Amanda Griffith-Atkins  32:44  
It's time to retire.

Madeline Cheney  32:48  
Okay, so one side of this, I want to acknowledge for whatever reason, I never got a submission from someone who is one and done the non carriers, but I've decided to not have more children after they have that one child. And I know there are plenty of people who are in that situation. So I'm just this is like a nod to that option of like, yes, you can have that child that has disabilities. And then you can be done. You don't need a carrier status to like, explain it or like whatever, like one and done awesome option. Very valid. Okay, now we are going to move on to the unknown carrier status group, right? This is one that intrigues me because I just didn't even think about these people existing. And I should have because, of course they do. So we're going to start by kind of organize these into a spectrum. There are four parents that are in this category. And we're gonna go from being all done and then going to having more children. So first, we have Allison.

Allison Wolf  33:47  
I always wanted three kids. But we decided to be done after two after my son was born extremely premature at just 25 weeks. Really, the reason why we chose to be done was my water broke very early. And the risk of that happening again, was just too much for me. It was too much to think of having to abruptly leave two children and be stuck in the hospital with two children at home. And then to potentially put another child through an extremely long NICU stay, and to put my own body through the multitude of risks that come along with that. And, you know, it's interesting, because like I said, I think we knew pretty early on that this was it. This was, these were the reasons why. And we felt pretty resolute in that I have lingering sadness over not ever having another baby. My experience with my firstborn was completely different than my experience with my son. And I didn't get to do a lot of things with him that I did get to do with her. I didn't really get to baby wear him. I didn't get to breastfeed him, you know, all these things. And some might think that maybe I would miss that enough to want to have another baby, but I am absolutely and completely done. I think it was frustrating to hear a lot from people like, you don't want to make a decision like this, while you're still really going through it. You want to think about it. And I think that's true. But at the same time, I do think there's something to be said about just being sure. Like, yes, we are young family. And yes, I do feel sad about that. But I think for someone else who might be feeling like this is the right thing for them. And if you don't necessarily have a certainty that their things might be the same, but there are still high risk factors for it. I think that I came to the conclusion that it's okay to make a decision that makes me sad, but yet, I know is still the absolute best decision for me, and for our whole family. 

Amanda Griffith-Atkins  36:16  
That is so important, what else and said that the right decision for you and your family may not feel good. I think that is so important that you might actually feel sad about the decision, and it's still the right decision. I love that.

Madeline Cheney  36:34  
Yeah, I think there's not really, unless you're one of those people who are like, Oh, I'm fine with because we have it, I don't feel sad at all. And I don't feel tempted to pursue that at all. That might be a simple thing. But I think for the majority of us who have some kind of plans for our family and wanted more children are differently, like, there's going to be complicated feelings about whatever we choose, you know, you're going to either feel sad and grieve that, like Alison and so many other moms like that, or, you know, this fear that you're riddled with while pursuing having more children, or it's just so complicated. And I love that she acknowledged that, like, my sadness does not indicate this is the incorrect decision.

Amanda Griffith-Atkins  37:13  
And also, Allison had to make a decision, considering her two children that she currently has. And I think that was a really good point that she's like the risk of me being in the hospital and having another baby in the NICU, that is not worth it. Like, I cannot go into this, knowing that that's a possibility because she has to be mindful of her other two kids too. So I think that's something that we have to consider as well. It's not just about do I want more kids, it's not as simple as that. There's an entire family unit that we have to take into consideration as well, and how having another child, and like Alison said her water broke really early, like, could that have been a health risk for her as well. So we have to take our own health, our own body, as well as our other children into consideration. It's not just the simple question of do I want more kids? Yes, I do. But there's a lot more complex than that. Right?

Madeline Cheney  38:07  
Yeah, totally. And then even just throwing I mean, this is kind of similar to the water breaking, but throwing in things like Taylor, like, where she talked about how she adopted and they're not sure if they're going to adopt another child or, you know, conceive naturally, I'm assuming there's some kind of fertility thing going on there. And then, you know, I'm speaking for myself of like, recurrent miscarriage. I mean, you have like the disability part of this. And then you also just have life. Everyone has such different factors going into this. And yeah, you do need to take in consideration what is best for the whole family, including other children that are already there, you know, you do and it's hard, you know, because you're like, well, this probably be really hard on them. But like, also, will it like really benefit them? And I mean, there's just all of this as complicated. Yeah, thank you, Alison. We are now going to hear from Brea.

Brea Rainey  38:56  
We've chosen not to have more children, because we don't have a diagnosis for our daughter, still. And so we don't know, if we're carriers for this thing. And if we could potentially have more children with this. And that uncertainty of whether this could affect our future children just looms over us and that I don't think I could ever relax in my pregnancy or birth or raising another child, not knowing. And it's been hard to imagine that because my husband had four siblings and I had three siblings. So it's hard to imagine our daughter not having any siblings, but you have to keep in mind our mental and physical energy. Because it's a lot on us mentally raising our daughter and physically as well having to carry her around everywhere and her not being able to move herself. And I don't think I could go through that again with the pregnancy and be able to care for my daughter the way that she's cared for now. And I think that advice for anyone else is that this is the type of thing that is not a one size fits all type of situation. And you kind of have to weigh what works for your family and what doesn't. And sometimes that's different for everybody. Some people might feel like they can totally do this again, and others feel like they can't. I'm one of those that feels like I can't. And that's what got us to this decision of staying with one child until maybe we might change our minds if we know more. But the uncertainty is not worth it.

Madeline Cheney  40:42  
Again, with Brea's as well, I just I feel that grief, right like that heaviness of the situation. I just feel for her.

Amanda Griffith-Atkins  40:52  
I love it, that she's acknowledging the importance of mental health in this process. I think we feel pressured to power through and ignore our anxieties and our fears. But I see such strength in her statement of saying, you have to consider your mental health in this and for me, it's not worth it to go through it again, I can't do it. And I really admire that in her that she's acknowledged that and I know, so many of us can relate to that feeling of I cannot do this again. And so I see a lot of strength in that. And also I love how there was some flexibility at the end, she said, You know, that's where we are right now. If we get a genetic test back in a year, and we decide we want to try maybe that's sort of the subtext of I think what she was saying was that she is leaving a question mark there. I don't know how old she is. But I like that, that gives her a bit of hope to hold on to that. We don't know what the future holds. This is where we are right now. And I think that can be really helpful to to try and just be like, we don't know what the future is gonna hold 100%.

Madeline Cheney  42:02  
Yeah, I love that. And that's really a recurring theme in this too, is that flexibility of being like, I decided this, and then maybe this will happen, and then I'll decide that and then we'll pursue this other thing. I mean, like, that's kind of what our experience has been. And I think that flexibility is going to be a real gift to herself of being open. Right? And being like, this is where we are right now. And it might stay this way forever. But it might not. I love that. I do also think that there is something to be said to for Alison of like, people say not to decide right now before you're ready. But I just know, this is what's right for our family. And I think that happens too, you know, and I think both are great, you know, to either stay open or to be like I just know what we're supposed to do. Yeah, so thank you. Brea, we're now going to hear from Maddison.

Maddison  42:55  
Hi, my name is Maddison. It's actually still unknown if we're carriers for my daughter's rare genetic condition, just because of the lack of research and knowledge on the condition. But after three years of research studies, and genetic testing on all three of us, we do feel fairly confident going into having a second baby. It's still a conversation that we're having all the time. But the decision is one that we feel fairly confident in. It's been a lot in her three years and a lot of hospitalizations. So this decision to have a second baby is hard, you don't want another baby to go through the same thing that you've seen your first baby go through. But it is starting to feel like it was definitely a fluke thing for the first, our first child to have such a rare condition. My number one piece of advice to people, if I'm in the place of giving advice, is to look for the good in your child, it's really easy as a medical mom, to see all of the things that cause a lot of hardship on your child and on you. But at the end of the day, there are so many good things that your child's brought to you. And our dream initially was to start a family. And we want to continue that dream by having another baby. And we want to allow Eleanor to have the experience that we had growing up of siblings and family. And so with that being important, we feel like this is the best decision that we can make for us. And I offer that advice to anyone else.

Amanda Griffith-Atkins  44:29  
I think that's what gets us through everyday right is seeing the good in our child and knowing that we're the safe space for them to come home to where we see them as just who they are. I don't see my son Asher and think oh, there's a kid with Prader-Willi syndrome. I think that's just Asher, that's part of his personality. That's who he is. And I love what she said about acknowledging that part of your child when you're thinking about having other kids that you have to go into ,if you're going to make the decision to have more kids you have, have to acknowledge that your kid of course has value and you love them with their disability exactly how they are.

Madeline Cheney  45:08  
Yeah. And kind of like, the full picture, right of like, we always wanted a big family or more kids, you know. And so like, we feel comfortable moving forward with that and giving her a sibling. And I think that's, that's a really great place to be in. Like, if she's comfortable with that, and they're, they want to move forward, like, awesome, you know, I feel excited for them. Yeah, it's

Amanda Griffith-Atkins  45:27  
almost like the hope and the desire to have another child outweighs the fear. It's not a math equation, but it is kind of at the end of the day, like, what is guiding you most of all, is it fear? Or is it the desire for your family to look a certain way and at the end of the day, that's maybe how you're going to make your decision. You know...

Madeline Cheney  45:46  
It's totally a math equation. And again, there's nothing wrong with saying the fear is bigger than that desire, we're staying with this. And there's nothing wrong with saying that desire is, I'm okay with going through that fear to have this desire happen. It's totally a math equation and not to simplify it. But like, yeah, simply like, there it is. Yeah. All right.

Amanda Griffith-Atkins  46:07  
Well we just solved it. Good. Good job.

Madeline Cheney  46:09  
Okay we can be done now. So like, go make your decision. Good luck. Okay, we're going to hear from Caitlin.

Caitlin Castro  46:17  
Hi, my carrier status is unknown. But we decided to have more children naturally anyway, without knowing exactly what mutations are causing my daughter's condition. She's undiagnosed, we would not have been able to screen for them in any future embryos or prenatal scans. Additionally, none of her conditions were detected prenatally. So we really didn't have any idea when we decided to move forward how likely or unlikely or how affected our future children might be. Basically, until they were after they were born. We did know there was a chance we could have another child born with the same condition. But we chose to move forward anyway. Mostly because we felt like our family wasn't complete. And the more time that went by the more we really were feeling the the absence of a sibling for our daughter. We hoped that her mutation is a de novo mutation. However, in recent months after we had more children, it does seem likely that we might be carriers for her condition, carrier status for us would mean about a one in four chance of another child being born affected. We ended up getting pregnant after her with fraternal twin boys, I gave birth to them when our daughter was about to turn four years old. Our boys are now a little over a year old. And so far, neither seems to share any of their sister's medical complexities, which is quite lucky if we are carriers because it would have actually meant about a 50% chance of one or both of them being affected. Honestly, the decision has been amazing. It might be easy for me to say that because we did end up having two, so far pretty typical siblings, but watching our daughter interact with them and seeing how much they light up when their big sister enters the room and how much joy she gets from being a sibling to them. And being a big sister and being able to help them, teach them things. Make them laugh. It's really been, I guess, heartwarming to say the absolute least. I feel very lucky that our three kids have each other I think it's made us better parents to her to be able to parent her brothers as well. When she was very young, one of our home nurses casually ask when are you having more? And I yammered and tripped over my words trying to answer and she quickly kind of cut me off and said, well, I hope that you don't let any of these complications get in the way of that. It would be a real shame. And I think that would be my advice to others looking, you know, from perspective, now that we do have more children, it would have been a real shame for us to let the fear rob us of the joys of making our family more complete. So I'm really happy with our choice to go ahead and have more despite sort of the unknowns of a repeat condition.

Amanda Griffith-Atkins  48:51  
So that's another one where the desire to have more kids outweighed the fear. Right?

Madeline Cheney  48:57  
Yeah. You know, it's difficult because it's like those of us I know, you and I are both in this boat of like having multiple kids. And so we've had the experience of seeing that sibling relationship of seeing that in our, with our children. And it's hard to imagine my life without that and seeing that and being able to witness that. And I feel very, very fortunate to be able to experience that as I know, it's not a super simple like, if you want more kids, you have more kids. And if you don't, you know, you know I... we're acknowledging that, but there is this part of it that Caitlyn brought up of like, it is really awesome for a lot of us. And so, and then even just thinking about the episode that released just last week with Melissa, where she talked about her son Christopher and his relationship with his brothers and just how that has been so incredible. And I think it's important that in this conversation, knowing this might cause extra pain to those already grieving the decision to not have more children. But just acknowledging that like, yeah, like having multiple kids, for a lot of us brings a lot of joy. Yes, it makes it more calm. complicated. And it's...there were many times especially when Kimble was a little baby where I was like, Man, this is hard navigating both these children's needs like being in the NICU and leaving Wendy behind and seeing her struggle, just like we were like, it was hell. But like, I also look back now and like, I'm so grateful that we have, you know, the both the kids and I am hopeful for more in the future. But anyway, I guess this is, we do need to acknowledge that, that aspect of it that like, yeah, it is really awesome for a lot of us.

Amanda Griffith-Atkins  50:30  
Yeah. I'm also curious how birth order plays into it, like Caitlin's firstborn was disabled, my firstborn was disabled, your second born was disabled. So I'm just curious, you know how that impacts you? Because like, Yeah, especially if you're a carrier, and your second born, I guess, in your situation, if you're a carrier, and then the first one, you obviously don't know anything's going on, you don't know anything about your carrier status. And so you just go into having another one kind of blindly, you know, like everybody else. And then you're like, oh, my gosh, I had no idea that this was even going on, and how then that really impacts your decision to have a third. So then, and then, in my case, how my first had a disability. And so for the next two, it just made me so aware of what could happen. So it's just interesting how birth order and you know, if your first is born with a disability, and you're a carrier, you might end up there. Whereas in your situation, your first you had no idea. So it's really I feel like probably makes a bigger impact than we realize on family...

Madeline Cheney  51:36  

Amanda Griffith-Atkins  51:37  
...When your disabled child was born in the order.

Madeline Cheney  51:40  
Yeah, because like, in a way, like you say, You're a little tricked into it. 

Amanda Griffith-Atkins  51:42  

Madeline Cheney  51:43  
If your a disabled child is not the first child. Because it's like, I don't know what I have decided to have. I mean, like, yes, I guess I would have because here I am wanting another one. But like, there are those of us who like had that non disabled child first, and then a disabled child, you're like, well, here I am with multiple kids. Yes. still needing to take care of this fragile child, you know.

Amanda Griffith-Atkins  52:02  
That's huge. Because, yeah, I hadn't even thought about that. But you're right. Because when you had your son with a disability, you already had a what a four year old did you say? Or how old?

Madeline Cheney  52:12  
She was two.

Amanda Griffith-Atkins  52:12  
She was two. So you had two under two and one of them with a pretty significant disability. That's, that...

Madeline Cheney  52:18  
It was rough. 

Amanda Griffith-Atkins  52:19  
My gosh. 

Madeline Cheney  52:20  
It was so rough. 

Amanda Griffith-Atkins  52:20  
Yes, yes. 

Madeline Cheney  52:22  
And she struggled. There's a whole episode about, she really struggled. And then there's also like, side now I know, this is kind of going on tangent, but there's also the whole like, okay, so like, does Wendy have that deletion? Because females don't usually present symptoms, and therefore, she could be in my boat. And so I think of that, too, like, what's, what Wendy gonna do? You know, she talks about wanting to be a mom, and like, you know, and she knows she might be a carrier for his condition. And she's like, that'd be awesome if I had a little boy like Kimball, which is just the sweetest thing. But it's also like, oh, honey, like, also, I know what you mean. But like, also, it's hard. You know? I don't know. There's just, it's just such a spectrum. And there's so much there's so much. So will you do genetic testing  on her? Yeah. But I don't know how soon we initially wanted to do it like now, but they like kind of discouraged it, like so young to know. But I'm like, then you can talk about her whole life. And it's not like this big like, guess what, you know, anyway, yeah, that could be a whole episode to just be a carrier. 

Amanda Griffith-Atkins  53:18  
Yeah, that's a hard decision, right? 

Madeline Cheney  53:19  
Well, I guess I did do an episode all about being a carrier. I'll link that one too. But yeah, that was two years ago. Anyway, adventures. Thank you, Caitlin. Okay, so now we're moving on into the carrier status zone. And I'm interested to know, like, I wonder if people are going to continue listening to this section. Even if you're not a carrier, I think it's fascinating. It's an ethical predicament of epic proportions, right? Like, there's several different things that you can do as a carrier. So really quick, as I mentioned, that just means that you gave your child that condition. And, you know, when we were told that I was a carrier, our geneticist said, you have a few options, you can just be done. That's the obvious one that you could do to prevent this right. To use those words. You can continue on naturally, you can do IVF. And he didn't say this, but this is also an OR you could terminate and use that as a way kind of almost like IVF, I guess, or you could adopt.

Amanda Griffith-Atkins  54:19  
When you're doing IVF, then you're doing genetic testing on the embryos.

Madeline Cheney  54:23  
Yes. Yeah. So basically, you take those embryos and you test them and you only implant the ones that don't have the deletion which all of this I mean, like, this is like next level complex, complicated. Oh, what a nightmare. I feel for all my fellow carriers, right. Hey. Okay. So we are first going to hear from Carlita.

Carlita  54:46  
My husband and I are both carriers for a rare genetic disorder called crabby Luca dystrophy. And we decided that for us, we would not have any more children. Our son's condition is typically fatal by age two with out treatment. He is the most joyful, happy and comedic little boy, but he still has many needs, he uses a wheelchair, he has a G tube, a communication device, and we go to between three to four therapies per week, but we absolutely would not change one single thing to have our son here with us. The prospect of having another child endure all that he has in his short life was not something that we felt comfortable with. And I ended up having my tubes removed when our son was less than one year old. The decision to do that has been a roller coaster of emotions for both me and my husband. Most days, I'm content with our family of three. But some days, the what ifs creep in. The questions from family and friends, weigh heavy on my heart. And the feeling of anger, that this decision was something that was made for me, not by me, feels heavy. There are also times that my husband and I feel differently about the topic, it definitely fluctuates. And we have to be very intentional about our communication. For anyone navigating this road, my advice would be first trust your gut. And remember that you alone know what's best for your family. And second, will be to remain open and give yourself grace, if your desires fluctuate or change over the years. We're all human.

Madeline Cheney  56:27  
For those unaware, she mentioned having her tubes removed, and so that as removing your fallopian tubes, so you cannot get pregnant naturally anymore, just to kind of clarify that. And you know, I really love that she talked about the duality of acknowledging how she loves her child. And you know, she wouldn't change him. And she's glad he's the way he is. But then we're also not going to have another child with this since we can prevent this. So there's that that important distinction, I guess.

Amanda Griffith-Atkins  56:56  
And I think she said something that I know resonates with all of us in this situation. And that's that the decision was kind of taken away from her. And that's what we grieve, right is the fact that we don't get to make this decision joyfully and easily the way that it feels like maybe some other parents are able to do it. We've all had kind of the vision of what we hoped our family to look like. When we're little I know so many of us said, I want three kids, two boys and one girl or whatever, right? I feel like little kids, little girls maybe all have their little answers for that. And we envision that it's going to look a certain way. But when you get to adulthood, and you're faced with disability and the massive decision of trying to navigate that in a way that works for everyone and is safe and healthy. It just feels like the decision has been taken away from us. And that's the part that feels unfair.

Madeline Cheney  57:53  
It feels so unfair. Yeah, it really does. It's just another aspect of what we grieve as parents, right? Like, there are so many things that we do grieve don't have to process through. And this is one of them, like with any of us, you know. And then if you're a carrier, like especially you're just you're pinned in a hard spot like you're like, there is no easy answer again, unless you are like, Oh, I'm happy with just one, I don't even want more kids. That's great. And often I've wished that was me. I wish that I didn't have that desire. And I'm probably a lot of people listening right now feel that way too. Like, wouldn't that be nice if there was no desire within me to have more kids? And that's probably the population that's listening right now. Right? You wouldn't listen to this episode about family planning. If there wasn't some aspect in your heart, some part of you that kind of does want more kids or really does. And it's like Carlita said like, it feels like it's made for you, or at least is made way more complicated than it would have been otherwise. 

Amanda Griffith-Atkins  58:46  
And Carlita didn't mention if she and her husband would consider adoption, but I wonder if that's something they would consider? Or if it just feels like no, we're done with our one child. And this is what our family looks like right now.

Madeline Cheney  58:58  
Yeah, I actually was seeking someone with a perspective of the, hah adopted as a carrier, because that is an option that they present. And it's like, yeah, you could do that. But interestingly enough, I was looking like within this group called Remember the Girls the connection I have there. It's about being a carrier with excellent conditions. It's like a group for those of us who are and she was like, I can't tell you about anyone that's adopted. She was like, I feel like most people do IVF or do not have more children, or the ones who'd have adopted are people who have known that they're carriers before they have any children, which wasn't exactly this population. Right. I was like, that's not going to resonate as much, but I found that interesting. I'm sure people do it. But I guess this is another nod to that option, right. Without being able to give you someone to speak from experience. Yeah, that is, I mean, I think it's just, it's like IVF adoption, like these are all like very complicated things. And expensive and just, yeah, there's no easy answer to these. Okay, we're gonna hear now from Marie.

Marie Wood  1:00:02  
Hi, my name is Marie and I've been married to David for 20 years, our two oldest sons, Lucian and blaze were born healthy. Our third son Reid was born in 2007, unable to breathe or move on his own, and eventually was diagnosed with Myotubular Myopathy via muscle biopsy. The NICU team asked us if we wanted to pursue comfort care or try everything possible. Basically, their position was that he didn't have a lot of time to live and we should just make them comfortable. I explained to the NICU team that his lifespan was not a relevant factor and the effort we were willing to make for him. I said, however long we are blessed to have Reid in our lives, we will do everything we can to make it as happy and loving and meaningful as possible. So we utilized aggressive medical interventions, and Reid has thrived far beyond the dire prognosis we were given. We didn't intend to have another child we were using birth control. But when I became pregnant again, we decided to confirm Reid's diagnosis genetically. And to see if I was a carrier, which I am. We met with a genetic counselor, I was offered prenatal testing options, which I declined. Both David and I have multiple degrees in science and philosophy, so we were well aware of the probabilities and both experienced in dealing with ioethical Issues. I stated to the genetic counselor, I know that Paley has a 50% chance of having Myotubular Myopathy, but he has a 100% chance of being loved. Paley was born in 2010. With MTM again, we decided that we wouldn't have any more kids. But in 2017, I found out I was pregnant again, and that he was a boy, we again declined prenatal testing. Cutler was born very healthy in 2018. We are so grateful for every single one of our children, they all bring incredible joy to our lives. Reid and Paley do require a lot of care. And we've had to rearrange our lives to accommodate them. But they're bright, happy kids who thrive with the love of their family and the simple things, their brothers have always adored them. The strain that these medical challenges have on our marriage and family have been hard, but also refining. David and I love each other more, because we've been through the fire together. We also accept the boys as they are, even as we hope and work towards medical advances and legislative and social change. If there's anything, any advice that I could give someone in my situation, is to think about what matters most to you what your values and priorities are, and let that be your guide. Don't let anyone else tell you what you're not capable of. Know that you do have a choice that you do have power. And remember that ultimately, we're all just trying to muddle through as best as we can. So be kind to yourself.

Amanda Griffith-Atkins  1:02:45  
Wow. Yeah, that's there's a lot in there. And I love what she said about, you know, what's best for yourself, you know, you have to make that decision. And there's a lot of voices coming in. I feel like that's definitely a theme that we're hearing from each parent is that the decision that you make for yourself and for your family is the right one. And man she what an example, like five kids, and two of them have disabilities. And she seems she's doing okay, like, I love it. Now, like she's here, she's still here. And I love it that she acknowledge like, it's been hard on her marriage, but they're getting through it. So that's really encouraging. I think for listener out there who's feeling that they can't do it. I imagine hearing Marie's story feels really encouraging.

Madeline Cheney  1:03:27  
Yeah, I think there's also like this feeling of like, well, I've had one child with CVPX 1. And a lot of that, I mean, not all of it, but like, a good part of the hardship there was learning how to do this, you know, and figure out what the heck it is. And so I had that thought too ofjust, I mean, I know that like shouldn't necessarily intentionally have more children with the condition but like, just kind of like, okay, like, maybe maybe it's not too bad. If I already kind of know this thing. You know, it does get more complicated when there are, you know, those chances of them not surviving and stuff. That's, that's when it gets me. So thank you, Marie, your powerhouse. We are now going to hear from Thea.

Thea Moshofsky  1:04:09  
Hi, my name is Thea, and I'm going to share a little bit about our story of being a carrier and wanting more medically complex children. So I'm 32 years old. I'm actually pregnant right now with our third child due in the next couple of weeks. We have two kids already a four year old daughter and our two year old son, who shortly after birth was diagnosed with Phenylketonuria or PKU for short. And not only in that postpartum time were we grieving this diagnosis, but we also had always envisioned having a large family three or four kids and I remember, not that I needed to decide or we needed to decide in those early months postpartum, but I do remember feeling this almost like, oh no have, we also lost this dream of having a large family, when we just really didn't know what all of our son's medical condition would require of us and our family, and how complicated or complex it would be. And I actually remember even at one of my follow up postpartum appointments, the OB who's not my normal doctor, but she went ahead and recommended that, oh, if we got pregnant again, we could just get an abortion. And I haven't, like let in or said anything to kind of warrant that advice or suggestion. And I remember looking down at our probably like six week old son, and just the impression that I got from her recommendation was, oh, she doesn't even think his life has value. And that was really hard. But over time, we just continued to build confidence and caring for our son and understanding more about what it means to care for a child with PKU. And we started to understand that we can care for our two kids, and we have the capacity to do more and that our dream was not lost. So this third child that we're pregnant with now does have a 25% chance of having PKU as well. And something that I don't know how to explain this, but there's this sense of not wanting my next child to suffer from the same rare disorder, because I wouldn't wish hardship on any of my children. And then simultaneously feeling this desire that this next child would have the same genetic condition as my son, so that he would have a support person for life, feel less alone or weird or singled out. And I think it's a pretty unusual thought process. And it probably makes little sense to the outside world, but it's actually something I've heard from other PKU parents as well that are growing their families. For me, personally, I am glad I don't get to decide this baby's fate will also have a 25% chance of having PKU, but that it's up to God or nature's hand. And I trust that our families equipped either way, and that it's just going to grow as it's meant to.

Madeline Cheney  1:07:25  
You know, her decisions and her thought process are very relatable to me, because, as I probably talked about too much in different episodes, most recently in Episode 96, but like, we made that decision of like, yes, we're gonna go into this knowing that we could have another child with the same condition as Kimball. And part of that was like the same type of thing of like, then Kimball would have another little buddy with CVPX 1. And there's also this feeling of kind of like that association of the condition with your child, right, like so like, Kimball feels like, it's complicated, and we're human, but I feel like he kind of is CVPX 1 to me. And so I just picture another cute little kid like Kimble. And I'm like, Heck, yes. You know, I'd love that. Also, acknowledging like, I know better than anyone that hasn't experienced CVPX 1, I know how hellish it can be when they're in the hospital, and you don't know if they're gonna live and just all of it. But there was something very empowering about being like, but I'm going to do this anyway. And I know that I can do it, because I've done it before. That being said, since that episode was recorded and stuff, we have decided to pivot and do IVF. So I mean, like, I just, it's like, everyone's saying, you got to stay fluid. But I guess my point here is that, like, I get Thea's ideas with this, like, it feels so muddled up when you already have a child with this condition.

Amanda Griffith-Atkins  1:08:47  
Yeah, and I think she said so many things that resonated with me. And I think something that really stood out was just the doctor's sort of blatant, like, disregard for her child and saying, Well, you could just terminate if you have another pregnancy and how crushing that must have been like, when I mean, she just set the scene so perfectly. She looked down at her six week old son and thought is this doctor saying that I should have never had this kid? And, you know, again, like we have to mute out the voices, whether it's a physician, a friend, a family member, sometimes we do have to mute out those voices that have no idea what our actual lived experience looks like. Like, she went from the doctor saying you could terminate if you had another pregnancy to saying, if we had another child with PKU, like that would be okay, you know, and so I think it's cool how she's been able to not soak in all the voices and able to really be in touch with her soul and her spirit and say, You know what, we can do this. I think that's huge.

Madeline Cheney  1:09:49  
Yeah, amen to that. Yeah. So you can just feel this clarity of like, we'll handle it like no matter what happens we'll handle it. And again, like what you know, we've heard before of like, you need to take your mental health and capacity into consideration. And so this is that other side of Thea saying like, Yeah, we could handle that. So, you know, we're okay with that those risks, and you were even, like, we see some positives if that does happen. And so, yeah, I really love that clarity. Here we go, we're gonna go into Emma's submission about her decision to choose a carrier, obviously, but her decision to use termination as a form of reproductive care and being a carrier. So here is Emma's.

Emma Bliss  1:10:30  
Hello, my name is Emma Bliss, I am currently a carrier that is done having children. But in the past, I have been almost in every category listed. I have a an eight year old son currently, who does not have Myotubular Myopathy, which is the excellent condition that I am a carrier for. We had a child Caleb, who passed away at five months of age, and he was in the NICU for five months and diagnosed at that time. And that is when we also found out that I was a carrier for the condition. And so that changed the trajectory of my entire life. We decided and knew that we wanted to have more children. So we tried again, naturally knowing that our chances were 50/50, of having a boy with the condition and 50% chance of having a girl who might be a carrier. And so at that point, it was a couple years after Caleb had passed away. And we tried naturally, to conceive again. And we found out at 11 weeks of pregnancy that we were pregnant with a boy with the condition Myotubular Myopathy again, and he was affected. So at 13 weeks of pregnancy, we made the hard decision to terminate that pregnancy as we would never put a baby or child through what Caleb went through again. And so at that point, we decided to look into IVF, we weighed all the options, we started creating a probe with the lab. And at that point, we found out that we were pregnant again, not planned, with a girl. And so at nine weeks, when I found out that she was a girl, we decided to not do any further testing and continue on with the pregnancy. And at this point Isla is born, she is asymptomatic. We don't know if she is a carrier, she has a 5050 chance, but she is healthy, and she is happy. And she has no symptoms. And so it hasn't been easy. But my number one advice for navigating through this is to always have hope, because there are always options out there for you to have the life the family that you desire.

Amanda Griffith-Atkins  1:13:03  
Wow, thank you Emma. I feel like that's such a brave and difficult journey that she has been on. I mean, I just think of Caleb and losing him at five months old, and just how absolutely heartbreaking that must have been and then to have to terminate a pregnancy too and just the immense grief that's in that decision. It's never easy to make a decision to terminate. And so I just wish I could give her a giant hug and really appreciate her sharing that perspective. And I think you know, there's zero judgment here, that's the thing that I want to say is that I don't know what I would have done in that situation, you know, I think I actually would have done the same exact thing that she did, because I can't imagine knowing when you've already experienced the death of one child, knowing that there's a very high likelihood that you're going to have to experience it again. And that's a decision that she made for herself and her partner. But as she said, she also made it for her child because she didn't she couldn't imagine bringing a child into this world and having him suffer like that. So I just really appreciate her sharing that and I know that a lot of parents are probably sitting here with tears in their eyes just like me after hearing that.

Madeline Cheney  1:14:20  
Yeah. Again, like just being in the situation of having these children with medical complexities. And especially when death is involved. I mean, you are just, you're faced with things that like you just never imagined. A lot of us don't even like, think about that situation existing right? Let alone being in that situation. And it reminds me of what we talked about in episode 33. With Orely Bill's, the palliative care social worker, which goes listen to it if you haven't yet, but he talks about this like, and this is kind of in a little bit of a different perspective, but of like having a child and trying to decide if you do comfort care and let them go or if you keep fighting for them and how it just flips everything on its head, you know, you're like, what's more selfish was more selfless, to let them go to keep fighting? I mean, and there are unthinkable things that we are faced with and that we do have to think about and yeah, like my heart goes out to Emma and anyone in that same situation and, and especially thinking about Caleb, and like, you know, five months old, and he was in the hospital that whole time. And I just, I mean, I think about if Kimble had passed away when he was still in the hospital. I mean, there was very little joy while we were in the hospital. He was, I mean, fighting for his life hooked up to all these tubes and all these needles. And I mean, maybe the joyous part he had was when I would kiss his cheek, but he couldn't hear me, we found out later, he couldn't see me. And you know, like, maybe he tasted my breast milk once that we like fed them on a Q tip. He seemed happy right then. But like, really? Was there other joy? And so I think that's one thing that really weighs into that kind of thing is like, is there joy to be had, because a lot of us, you know, we are in the situation of thea where like, we feel pressured to terminate or like, but we can see the joy that they've had, that I think if you look at a life where you're like, I don't see it, right, like, and how can I put them through that if it's not worth it, I, I think we need to acknowledge how complex this matter is, it's not just a simple choice of like, I don't feel like having this baby. There's so much that goes into it. Thank you, Emma, that's really brave of you to share that and very vulnerable, we're going to have our very last parent, Katie, who was actually on the podcast back in episode 19 and 20. Right, so this is like 80 episodes ago, she shared about her daughter, Claire, so she is going to talk about her decision as a carrier.

Katie Peterson  1:16:39  
My husband and I are both carriers for the disease my daughter has. This means that with every natural pregnancy that we would attempt would have a one in four chance of having a child with the same disease. So as carriers, we decided together that we were going to do IVF with the genetic screening, which means that once you have your embryos come off to a lab, and they can tell you how many of your embryos are affected or not. And then from there, you can go on to hopefully implant them. And hopefully, you're pregnant and have another child. So for us, the why was pretty easy. We didn't really have any hangups, to be honest, we never even have considered trying naturally, again, my daughter's disease, unfortunately, is terminal. And we love her to pieces, we think she's amazing. But we'll have to have a funeral for her one day. And if I can help it, I do not want to have another funeral for a child of mine. So that why was pretty easy for us, is, I don't wanna have to bury two kids. I mean, so for us, it's been pretty good. I'm pregnant with our third child. So our second IVF child, I know some people have had tear of the spine, like nothing crazy. Just a short blip, I didn't really have any terrible side effects to medication or the treatment processes for us. Or at least for me, it was not too bad. There were a lot of appointments. And I would say anyone going into advice of either doing what we did, or just in general, weighing your options is one, do not seek advice from people who are not in the same shoes of you, or who will never be, because it's easy for them to live in a fantasy world of this is what I would do if I was in this scenario, but they're not. And another thing I would say is look at the long term goal. It's not without its challenges. But long term, I'm really glad that we've done this, because, yeah, might be hard for some parts, but the end result is so worth it. And it's just such a small little time of your life. And I'd say the last piece of advice is, you don't owe an explanation to anyone at the choices you make.

Amanda Griffith-Atkins  1:19:09  
I just love that. So good. And one thing I love about what Katie said, and literally every one of the other 12 people that have spoken today, nobody came on here and gave advice that is black and white. Like nobody came on and said, "this is what you should do." And I think that is the mark of a disability parent is that we know the gray area. And we know that it's such a deeply personal decision that only you can make. And none of us have the right answers for every other person. So I just love it that that has been a common theme throughout all of this, that you have to listen to your gut. You have to talk to your partner, you have to decide what's best for your family. And I just appreciate all the gray that we've covered today. 

Madeline Cheney  1:19:54  
Oh, great episode.

Amanda Griffith-Atkins  1:19:56  

Madeline Cheney  1:19:57  
Yeah, and I think like 50 Shades of Grey, thw family planning. 13 Shades of Grey. I also just love that she said like, don't take advice from people who are not in your shoes. I got chills when she said that I'm like, not that like, I mean, I feel like, I don't know, I think my mom has said something like, just do whatever is best for you like that kind of advice that's great. Like other people can give that. But I do think they can't imagine, you know, they can try to imagine but they don't understand what it's like to be in your shoes, not just carrier status, or non carrier status or having a childhood disability, but also just being in your bones, like knowing what it's like to exist inside yourself in the situation you're in. And I think that's really good permission. For those of us who've received it advice that doesn't sit right with us. And we can say, hey, they don't get it, even if they are in the same diagnosis and status and whatever. They don't get what it's like to be you. And so we can discard that advice if we need to. And also, we can seek out advice of those who do get it. And in the show notes, too, I'll have everyone's social media links of everyone who shared who's comfortable with having their links on there, so that you can message them. Like if you heard someone like if you want to do IVF, and you want to message Katie, or if you want to message Allison or whoever, like if you're like, hey, I want to know more about that., what really has that been like, I think that's a great resource, too, is like going to someone you've heard on here today and picking their brain about it. Because everyone who's handles are in the show notes have told me that they are willing to be approached about their decision, from listeners.

Amanda Griffith-Atkins  1:21:34  
Yeah, I think that's huge connecting to people who really get it connecting to people who won't give you a, this is what you should do answer, you know.

Madeline Cheney  1:21:44  
Give me the gray.

Amanda Griffith-Atkins  1:21:45  
Yeah, you just need to sit down and talk through your unique situation. And like one of the contributors said earlier, like, there's a question mark there, right? Like, maybe you don't have the answer today, maybe you have some life to live before you're able to figure out what it's actually gonna look like for you. So and I think that can be hard to but trying to sit in the unknown. Like, as disability parents, we do a whole lot of that. And so when it comes to family planning, I think the theme is there as well sitting in the unknown, and not knowing which way your story is gonna go.

Madeline Cheney  1:22:17  
Yeah, totally. And then defending your decision and being confident with it if others question you and, and knowing even like, hey, we might change this, but like, but not letting other people shame you or kind of influence that in a way you don't want them to. And I will say this, too. You mentioned a marriage counselor. But I think that like we should also give a huge plug for going to therapy, working through a lot of it, not just like, should we have more kids? But also like, man, like there's a lot in each of these submissions, right, we go through a lot. So I think working through trauma that you've experienced, and also like, hey, like, I want to make this decision. I want help making this decision from someone who is trained to help with these types of life decisions. And then also, if you have a carrier status, like going to genetic counselors, like that's what they do, they try to help you know the options and decide what to do. So I'll put some links in the show notes to some good resources, pointing you towards some therapy options for that and genetic counselors. But it just it's a big decision.

Amanda Griffith-Atkins  1:23:19  
It is and acknowledging the grief and all of us. I mean, I think in everybody's story today, we heard so much grief, I think of Emma I even think of Katie like having to go through IVF and knowing that there's going to be discarded embryos potentially, and how complicated that is. And everybody's story has grief in it. And man that just adds up over time. And so I love it that you suggested like maybe even going to an individual therapist, or getting in a group or you know, sitting down with a close friend, and just having an honest discussion about the fact that this decision is not as cookie cutter as we thought it was going to be. Right. Like I said earlier, it's so much more complicated than we envisioned it being and there's just inherently grief in that because it's not what we expected.

Madeline Cheney  1:24:05  
Exactly, yes, yeah. It's we find ourselves living a life that we didn't think we would be. And that includes this, these types of decisions. So many people said, I pictured myself having this many kids and that many kids and I picture this and that for my life. And it looks like that's not gonna happen. That's a big deal. You know, that's a really big deal. So giving yourself the space and the gravity to really, really grieve that right? Like, we hear grief in the submissions of different listeners. But like, I think it's important like, man, do you need to have a good cry after listening to this episode, like, go do that, you know, like, walk it off, exercise, like whatever you need to do, like release that because I think that tension can kind of just stay inside us and how many of us are going through life, you know, with our children with disabilities? And maybe that grief is kind of there but like kind of that question like, are we gonna have more kids? I want more kids are we going to and never giving yourself the space to grieve that because you're busy with all the other stuff but like, Go grieve it take that time that you need in that space. 

Amanda Griffith-Atkins  1:25:05  
And like I always say on my Instagram, like you can grieve the situation and still love your child like, it doesn't have to be one or the it's not like, oh, I hate my life. I'm so mad that I have a child with a disability. It's No, I love my child so much. And I'm so glad that I get to be their parent. And this isn't the life that I expected. And it really sucks to see my child suffer. Right? That's what it is. And take it even one step further. It also really sucks that having a family is so much more complicated than I envisioned it, I really wanted to just be able to have sex and have a baby and get pregnant and give birth to a baby and live happily ever after. But for so many of us, that just simply isn't the way that it's happened. And you're allowed to grieve that and you're allowed to acknowledge like, this isn't what I expected. And I'm still grateful for the life that I

Madeline Cheney  1:25:54  
have. Yes, I can grieve your life and laugh at the same time or just grieve it if you're not loving it. That's okay. Just love your child you don't have to love your life. But hopefully that comes. Okay, well, I loved this conversation, this epic, long conversation about such a gray 50 Shades of Grey of family planning. Yeah, I think it's just it's just our hope that everyone listening is able to kind of process this topic, maybe make decisions, maybe put that on a shelf and wait, and you know, whatever feels right. And good for you right now. Yeah, but just know that you're not alone in this.

Amanda Griffith-Atkins  1:26:34  
And I'd love to continue the discussion. So if people want to hop onto our social medias, and let us know where you are in this decision, and what spoke to you what you struggled with, we're always down for more communication on this because everybody's story is different.

Madeline Cheney  1:26:50  
And we included 15 people's perspectives, let's get 50 or 500, right like let's get more. And I think that's helpful for other people, for those listening are like, my story wasn't writing here, you know, speaker and other people will be able to relate with that. So we'll put links for those in the show. 


All right. Well, thank you so much, Amanda, for tackling this topic with me is so great. I really appreciate you. 

Amanda Griffith-Atkins  1:27:12  
Thank you!

If you want to connect with any of the parents that contributed today, you can check out the show notes for links to follow each of them on Instagram and to message them there. They all gave permission for this. There are also links to follow Amanda and me so we can continue the discussion over there like Amanda mentioned. Also in the show notes are links to all the episodes mentioned in this episode. Join us next week for our 100th episode, where I talk about the ways and the reasons that we as parents raise awareness about things relating to our children's disabilities. And I think it's an important one so don't miss it. See you then!

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Living with Sleep Deprivation w/ Jill Arneson (Rebroadcast) https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-5-1/332732190-22050-1-40fed6f439bf6.m4a


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68: Dipping My Toes into Educational Advocacy