Introduction and Meet Kathryn Soper

Part 1 of 3 · Ep. 192

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Heather Olson Beale [00:00:18] Okay, this is Heather Olson Beale, and I'm here today with Kathy Soper, a bloggernackle queen. Is that fair?

Kathryn Soper [00:00:30] Wow, I don't know about blogger Nackle Queen.

Heather Olson Beale [00:00:33] I feel like I'm rubbing elbows with the rich and famous.

Kathryn Soper [00:00:36] Oh, please.

Heather Olson Beale [00:00:37] Oh, please. Okay. I was going to read something from your website, and then you can add to it or subtract to it if you want.

Kathryn Soper [00:00:44] Okay.

Heather Olson Beale [00:00:45] So on Kathy's website, it says that Kathy is the wife of one, mother of seven, a memoirist, essayist, editor, nonprofit CEO, practicing Mormon, depression survivor, down syndrome advocate, Greek blood American, Maryland bred, Utah transplant, word twist addict, and BSG groupie. Not necessarily in that order.

Kathryn Soper [00:01:08] Yeah, that sounds just about right.

Preferred Language and Terminology for Down Syndrome

Heather Olson Beale [00:01:11] So let me. I told you that I wanted to ask if you would say this is just kind of a ticky tack question, but it's important to me whether there's a preferred way or whether you would prefer for people to say that you have a son with down syndrome. I mean, are there certain ways that people refer to children that you like, or are there things that people say that make you cringe?

Kathryn Soper [00:01:34] Yes, definitely tell. I have to temper that by saying, you know, before I had Thomas, there were all kinds of things that I said that I were not at all intended to be insensitive. And so I do not want to be the kind of person who's walking around getting angry because someone phrases something a certain way, especially when there's. When there's no intent to offend, then it's kind of silly to take offense. Now, in the early months after Thomas's birth, I was very touchy because anything anyone said, it was like punching all these fresh bruises that I had.

Kathryn Soper [00:02:26] And so it was very difficult for me to have conversations about Thomas for a while. I was just very sensitive and vulnerable and raw. So generally speaking, I do prefer it when people say a son with down syndrome instead of a Down syndrome kid, you know, a daughter with down syndrome, rather than this down syndrome girl, simply because it's important to refer to these individuals as individuals first and not as a diagnosis first. Like you wouldn't, you wouldn't walk around and say, well, that's my diabetes brother and that's my cancer mom.

Kathryn Soper [00:03:11] And you don't label people with conditions, other conditions that way. Of course, down syndrome is not a disease or an illness, but still, people use it as a qualifier in a way that can suggest that it makes you a different kind of being than the rest of us, when really it doesn't.

Heather Olson Beale [00:03:34] Well, I just found myself when I was typing the notes, and I started to write that, okay, they have a son with down syndrome. And then I was like, oh, no, do I say down syndrome son? And then I was thinking, well, I should just be able to say son. And then I thought, well, no, I think it is important that he has down syndrome because that's what your. Your memoir deals with. So it's not like we can't say it at all. But I did just wonder, not for you to be, you know, criticizing, but in terms of just educating people, what. What was the most.

Kathryn Soper [00:04:01] Well, there's, you know, different. People have different feelings about it. Some parents are. Are extremely sensitive about language. I'm kind of more moderate. But there's a whole range. Like George Will wrote a blurb for the back cover of Gifts, and he thinks people first language is just a load of baloney. People first language being saying, you know, son with down syndrome rather than down syndrome son. He just thinks that that's a load of crap. So. And he's a very strong advocate. Down syndrome advocate. So there's a real range. And on the other end, there are people who have undertaken a very heated and sincere campaign to try to get the word retarded classified as, like, a hate crime kind of word, which I think is extremely extreme.

Heather Olson Beale [00:04:58] Okay,

Kathryn Soper [00:05:01] so I'm kind of in the middle of the spectrum, personally. Okay. You'll find people on both ends.

Heather Olson Beale [00:05:06] Find people on both ends. All right, so let's talk a little bit about. I've got a list here of questions more specific to the book and that center around down syndrome. So I thought I'd ask you to begin just if you could. And hopefully, I'm assuming that you're aware of this. Give us some. A little bit of history in terms of down syndrome and the way it's sort of been handled in the United States. Like, can you say how were down syndrome children or children with down syndrome treated like, back in the day? And are there differences now? Is that anything that you've engaged with at all, that idea, kind of the progress that's been made?

History of Down Syndrome in American Society

Kathryn Soper [00:05:43] Yeah, yeah, I can tell you a little bit about that. There was very much a lot of social, cultural pressure to institutionalize children with down syndrome. Throughout the 20th century, it was the norm for parents not to raise their child, but to send them to an institution. That began to change in the early 70s. There were some parents who were Kind of pioneers. Well, not kind of. They were pioneers in. In that they determined they wanted to raise their children.

Kathryn Soper [00:06:23] And so that was not a popular idea for a while. They really got a lot of backlash on that and a lot of unwillingness to help because the attitude kind of was, well, if you're going to take this upon yourself, don't expect the schools or whatever to help you out.

Kathryn Soper [00:06:48] And so there was some of the women that I've talked to who are older, whose children with down syndrome are adult age. They tell me stories about how hard they had to fight just for basic inclusion, basic rights for their kids to be able to have opportunities similar to what typical children have.

Kathryn Soper [00:07:13] And it's changed quite a bit since then. These last several decades. It has been. It's now very much the norm for parents to keep their children at home. In fact, parents who opt to give their children with down syndrome for adoption are pretty ostracized more privately than. Than publicly. But parents of kids with down syndrome tend to look down on families who don't keep their children at home and raise their children themselves.

Kathryn Soper [00:07:47] So that's. Overall, it's a very, very positive change. I still think it's important for there to be some flexibility because people's circumstances can vary so widely. But overall, it's been a tremendous change. Now, the big change in education has been the Individuals with Disabilities Education act, which guarantees people with disabilities fitting education just like any other child, like they cannot be discriminated against because of their disability, and services need to be provided in public education for all children.

Kathryn Soper [00:08:33] And that's been a tremendous law that was passed, and it has led to doors opening for all kinds of kids with disabilities. Sometimes there can be some rancor, some bitterness in the educational circles simply because there is this law and certain things are mandated through it, certain services, a degree of attention and care that some parents resent that because children who don't qualify for special education but still have other needs don't get the same kind of services. Children who are gifted and talented don't get that level of attention and care from the public schools. And I can sympathize with that because I have several of my children were profoundly gifted, needed special education for gifted kids.

Kathryn Soper [00:09:38] And it's been extremely frustrating, especially when they were in elementary school, for them to be stuck in classrooms where, you know, they just. They were not challenged, they were not engaged at all. And so I think that every kid, every kid needs an education that fits their needs. And unfortunately, because of budget constraints and the lack of There being laws to guarantee services for kind of kids. On the other end of the spectrum, usually gifted programs get cut first. You know, they're going to cut gifted programs before they cut any services for disabled kids. But this, I think that's.

Kathryn Soper [00:10:24] I hate to say it, but I think that as much as I believe gifted education is important, I think that it's more vital for kids with disabilities to get the services they're getting. That's kind of a tough thing to say aloud, but I think it's true. I think that these kids, their chances of having success in life in terms of being able to be independent and have social lives hinges on these inclusion opportunities when they're young in the public school system.

Kathryn Soper [00:11:03] And so I'm pleased that the law is in place and that services are offered. Of course, they vary very much from state to state. And Utah is a state with one of the kind of the worst packages of services for kids with disabilities, really. So that's. Yeah, well, that kind of goes with the whole Utah being at the bottom of the barrel as far as dollars spent per year per child for education. We've been at the very bottom of the list for a long time. And so this kind of goes along with that.

Heather Olson Beale [00:11:40] But they sort of like. And I don't even know who I mean by they, but I'm an education professor, so at least in circles, sort of, that I operate in Utah. Seems like they like to say, and look how well we do with how little money we spend. So it's sort of, from my perspective, it's a point of pride. We spend so little money, but look what we're still capable of doing.

Kathryn Soper [00:12:02] Yes, yes. Well, they try to frame it that way. I've heard it framed that way. And I guess I really wouldn't know any differently if I didn't have. Didn't know people all across the country and know what kind of services their kids are getting and be able to kind of compare and contrast that way. And there's a stark difference. Some families will move, you know, they will pick a state to live in based on what services will be available for their child. That's not an option for us. That's not something that we would do anyway. But for some families, it's that important to have that support, that they will just pack up and move everything in order to be able to get the help that they need.

Heather Olson Beale [00:12:45] Okay, well, those are some pretty big shifts you just described in 30 or 40 years.

Kathryn Soper [00:12:52] Yes.

Heather Olson Beale [00:12:52] That's good.

Kathryn Soper [00:12:54] Yeah. It has been just a night and day Change in many respects. There's still a lot of progress to still be made. There's still a very painful stigma, I think, that we're all aware of for people with disabilities in our culture. And while we're more apt to give lip service about the value of such individuals, we're still not very eager to kind of live according to the platitudes that we like to kind of spout off at the mouth.

Kathryn Soper [00:13:35] That was a difficult thing for me when Thomas was born, and I got a lot of people kind of telling me how lucky I was and, oh, congratulations. You know, you're so special and he's so special. And I would much rather hear that than, you know, these pity, pitiful responses. And, oh, no, that's what a tragedy. And that's the most awful thing I can imagine.

Kathryn Soper [00:14:03] But at the same time, it was painful to hear those sentiments from people that I would have bet money on the fact that they did not want to have a child with down syndrome themselves. So we're quick to congratulate others when it happens to somebody else and say, oh, it'll be such a loving child and how wonderful.

Kathryn Soper [00:14:25] But almost without exception, we are glad it's happening to our neighbor and not to us. And so that can make it difficult to hear some of the cheerful things that people say with the best of intentions, with the very best of intentions, but you're still aware. You're still aware as a parent of the gap between that cheerfulness and the reality of it all. And that can be hard.

Stereotypes and Misconceptions About Down Syndrome

Heather Olson Beale [00:14:54] Okay, so what would you say are some of the either stereotypes or misconceptions associated with. Associated with children or people who have down syndrome? Like, all I would know is that people tend to say, oh, well, you know, things like, oh, children who have down syndrome, they're so loving and they're so happy. Like, that's all I can think of

Kathryn Soper [00:15:12] is that those are the primary ones. Yeah, those are the most pronounced stereotypes, and they're stereotypes for a reason. You know, all stereotypes have their foundation in, at least to some extent in reality. And that's how we come to repeat these things all the time.

Kathryn Soper [00:15:30] But it's important to remember that kids with down syndrome are. They're each individuals, okay? They have an extra 21st chromosome, but all of their other genetic material is the same as a typical child's. And it would be pretty silly if we were to try to classify an entire population of children based on one aspect of their genetic makeup and make generalizations based on that.

Kathryn Soper [00:15:59] It's especially damaging when people tend to use complements, again with the best of intentions and far better than the negative stereotyping which, which was in place for so long. But it can still be a way of setting a child with down syndrome apart from his or her peers and a reason to not include. It's kind of like, okay, this child's so special, he's so special, I'm not going to invite him to my kids birthday party.

Kathryn Soper [00:16:34] You know, it's a way of distancing self from, from other. It can still be a way of, of putting distance between kids with down syndrome and typical kids. And that might sound awfully whiny for a parent to say, like, oh, I wish people would stop talking about how great my kid is and how special they are and how loving they are.

Kathryn Soper [00:16:59] And I can see that. I can see people rolling their eyes and saying, well, geez, what do you want? You know, how can we possibly please you? Okay, but it's. What has happened over the past several decades is that there has been a shift from regarding people with down syndrome as subhuman, you know, less than human, and now kind of the pendulum has swung the other way and we tend to classify them as superhuman, as something beyond human. Like there's a lot of rhetoric about angel babies even amongst parents of kids with down syndrome. This is a very, very popular metaphor to use and many parents really like it.

Kathryn Soper [00:17:48] They find it very comforting to think about their child as a special angel from heaven sent specially to them. As far as our house goes, gosh, Thomas, in most ways he's, he is the highlight of her family. In a lot of ways he's our easiest child. In a lot of ways. He has single handedly brought more love into her family than any other single family member has.

Kathryn Soper [00:18:24] And I can say all of those things without reservation. Even though the they in some ways play into some of the stereotypes that can be troubling. Again, the stereotypes are stereotypes for a reason. And yeah, Thomas has this capacity to evoke love in other people. You can see it in their faces when they interact with him. He himself is not particularly social or loving the way that kids with down syndrome are often depicted to be. He has autism as well as down syndrome. And so the social intelligence which is often one of the talents that kids with down syndrome have, that's not the case for him.

Kathryn Soper [00:19:15] He doesn't have. He doesn't run up and hug strangers. He doesn't climb on your lap and tell you I love you, I love you, I love you. He's not socially outgoing at all. And he's a very introverted, focused little boy who shows a lot of affection to his family, but he's not.

Kathryn Soper [00:19:39] He does not fit the stereotype of the hugging kid. You know what I'm talking about? So people are sometimes surprised by that. They'll. They can see he has down syndrome because of his facial features, and they'll come up to him and they'll kneel down and they'll have a big smile on their face, and they'll. Thomas, like this is going to be their new best friend. And he just. Sometimes he just turns away. Sometimes he actually takes his hand and pushes it outward as if to say, go away.

Kathryn Soper [00:20:11] Sometimes he'll run away. There's. There's an assumption there that he's going to love them readily because he has down syndrome. And again, I don't want to make a fuss about people being friendly to my kid. That's just stupid.

Kathryn Soper [00:20:31] But I think it's revealing. I think it reveals the assumptions that we carry about people with down syndrome. And I think that it's important to be. To be aware of that and to hopefully change that to some degree and realize that a kid with down syndrome shouldn't necessarily love you any more quickly than any other child. I mean, I think that's a really unfair expectation to put on a segment of the population.

Heather Olson Beale [00:21:06] You're talking. Sorry, I know I'm interrupting, but you. You're not limiting this to Mormon people, or are you? This angel baby idea.

Kathryn Soper [00:21:14] No, no.

Heather Olson Beale [00:21:15] Okay.

Kathryn Soper [00:21:16] It's very widespread.

Heather Olson Beale [00:21:17] Okay.

Kathryn Soper [00:21:18] I think it's hugely important for parents to not feel like there's only one way to think about it. There's only one way. There's only one true explanation for all of these millions of people who have disabilities. It's too complex for that.

Kathryn Soper [00:21:36] And I don't want to. I don't begrudge anyone, you know, whatever, however they want to frame their situation, to bring them comfort. You know, I'm not. I don't want to try to take that away from anybody, but I do think that when it moves beyond an individual's perspective or a family's perspective, and it becomes. It kind of seeps into the cultural fabric and becomes an assumption that everybody believes this way and that there's no other way to think about disability, then that's a problem. Especially in the church, when you are categorizing somebody as special, even in a positive sense, and you're putting them up on a pedestal, you are distancing them from their peer group, you're Distancing them from the rest of humankind.

Kathryn Soper [00:22:21] And it might not appear to be a problem because you're doing it in a nice way. Right. You're doing it in a complimentary way. But it can be similar dynamics to the problem of putting women on pedestals.

Heather Olson Beale [00:22:33] Oh, I've been thinking that as you've been talking, and I've been thinking in my mind, like, can I bring this up or is she going to think this is crazy? Because I feel the same way. I'm like, it's totally not meaningful for me at all. In fact, it is offensive to feel like someone's trying to persuade me, like in the ensign or in conference talks or whatever. Someone's trying to persuade me that women are so honored and treasured.

Kathryn Soper [00:22:57] Yeah.

Heather Olson Beale [00:22:58] Like, if it takes that much persuasion, something rotten in Denmark. I mean, really, I'm like, that's just not. But since you brought it up, then I could. I can talk about it. Yeah, no, I feel like that.

Kathryn Soper [00:23:11] I'm glad you understand, though, what I'm trying to get at. Because when I'm saying. When I'm describing my perspective on these things, I just know that it could be easily misunderstood. It could be misconstrued as a really kind of sour grapes mentality. So I'm actually glad that you know what I'm getting at here. And that although. Go ahead.

Heather Olson Beale [00:23:36] I just was gonna say, when I've mentioned that issue about women to people, I think people, often the audience also thinks that I like sour grapes. Kind of like g. So you're saying that you want it to be. You want for women to be treated differently, or you want for them to have different status or whatever. And now, you know. Now you're saying that you don't like for us to say. Say how great you are. And then I'm like, yeah, I really don't. I really don't want you to say how great and important women are. I want you just to talk about how great people are.

Kathryn Soper [00:24:04] Exactly. Yep. There's this missing step between women are inferior to men. And the pendulum again has swung so that as far as what we say, not what we really practice with our behavior, but what we tell each other is that women are superior in some ways, especially spiritually to mental. And it's like we completely missed that. That middle spot of women are human beings.

Kathryn Soper [00:24:30] You know, it's like you switch. You swing from women are the weaker, inferior sex to, you know, women are in some very important ways superior. And neither one of those things is desirable. Both of those approaches are degrading to women.

Kathryn Soper [00:24:48] And it's the same with kids or individuals with disabilities. The greatest compliment that you can give a person with a disability is to regard them as your peer, a human being, someone who might be different from you in some respects, but has much more in common with you than they have not in common with you.

Kathryn Soper [00:25:13] And I think it's a really natural thing to come up with an explanation for a reality that's very complex and frightening and painful. We want to have comforting explanations for these very difficult realities. That's just how we are and there's nothing wrong with that.

Kathryn Soper [00:25:35] But I think it's important to realize that the stories we tell in our culture about disability, where it comes from, what it signifies, that those are things that we have constructed ourselves and those are paradigms that we have built to meet our own needs. And they're not necessarily based on any sort of truth with a capital T.

Heather Olson Beale [00:26:02] Let me, I'm going to ask you a question again about. Well, or just tell you about briefly about this article that I read about autism that has to do with this idea, our conception of. Yeah. What it means to have a disability or just the definition of disability.

Parenting Children with Disabilities and Identity Shifts

Heather Olson Beale [00:26:17] I read it a few years ago and wish that I had printed it or kept it because I've wanted it many times since then, haven't been able to find it. But there was a whole issue, I think, in Newsweek about autism and there was a piece in there written from someone who was in charge of or just a participant in this autism advocacy group. And what this group, this was just so hard for me to get my brain around what they were wanting to do. What they were advocating for was to remove the stigma associated with autism and for us to stop considering autism, for society to stop considering autism as like a disease or a condition or a disability and to just say it's not that nothing's wrong with people who have autism, it's just the way they are.

Kathryn Soper [00:27:04] Uh huh.

Heather Olson Beale [00:27:04] And I remember reading that and thinking, wow. I mean, I get where you don't want it to be stigmatized and you don't want for people to be harmed, but it also seems like. But, but are you really then denying that? I mean, it does seem like there are real issues and challenges associated with having autism and it seems like it would be the same way with down syndrome. So does that resonate with you? Or do you feel like, do you consider it a disability or do you feel like this is just the way Thomas is? I mean, would you, would you, are you okay calling It a disability or a.

Kathryn Soper [00:27:33] Yes, okay. Yes, I absolutely call it a disability. There's kind of a litmus test that parents of kids with down syndrome give each other, which is, if you could take away your child's down syndrome, would you? And some parents vehemently argue that they would not.

Heather Olson Beale [00:27:53] That's what this article was saying about autism, too. It was state stunning, but. Sorry, I totally interrupted.

Kathryn Soper [00:27:59] No, well, it's okay. You can kind of see the benefit to that line of thinking, but also the danger of taking it to such an extreme. Okay. It's very important for there to be a balance between stressing similarities between people and acknowledging and accepting differences. And there's kind of two different schools of thought, and one emphasizes sameness and one emphasizes, you know, we're different and there's nothing wrong with us, and that's okay. It's kind of similar to. In the deaf community. There are two very opposite philosophies, and one is that deafness. There's nothing wrong with being deaf. And deaf people do not need to even try to adapt to hearing people's culture.

Kathryn Soper [00:28:52] They can have their own culture. And then there's on the opposite side of the spectrum, there are the people who believe that this is a problem to be fixed and every single effort should be made to help this child be as much like a hearing child as possible.

Kathryn Soper [00:29:13] And I have sympathies on both sides. Okay. For Thomas, I very much want him to have whatever opportunities are truly beneficial for him, whatever will be genuinely helpful in enabling him to have a happy life. All of those things I want to have for him, and I work hard to help him have those things. At the same time, I don't believe that a typical child's life is the only version of a good life.

Kathryn Soper [00:29:50] I don't believe that Thomas is. He's missing out on many things that his brothers and sisters do. So I can argue it that way. But I could also point out that as far as he's concerned, he's having a great life.

Kathryn Soper [00:30:11] He has his own version of success. He has his own kinds of goals and interests. And I think it's harmful for us to assume that the only happy child is the child who's on the soccer team and plays piano and gets a part time job when he's 16 and serves a full time mission and marries some cute little blonde thing in the temple. I mean, it's just not right to hold that up as the only version of success, the only version of happiness.

Kathryn Soper [00:30:48] And so I think that there needs to be Flexibility there. I think there needs to be acknowledgement that the normal, you know, quote, normal way of doing things isn't always necessarily the best way, and that there are changes in perspective that can come to you, and they certainly have come to me. Where from reading my book, you already know that I had a lot of very strong feelings about the importance of my children's academic intelligence before Thomas was born.

Kathryn Soper [00:31:24] And I knew all the right things to say, I knew all the right things to believe, and I could present myself as someone who was mature enough to. Even though I, of course, liked the perks that came from having gifted kids, that in my heart of hearts, I didn't believe that made them any better than any other child. You know, I could convince you of that, but that's not what I truly believed.

Kathryn Soper [00:31:51] And the change that has come has been so fundamental and so dramatic that it's adjusted the way I look at everything, everything in life. And I guess what my point is, is that there are other ways of looking at life and people and the world where it really turns the usual priorities and values upside down, and it can be quite the opposite from what you've been accustomed to seeing and thinking and believing.

Heather Olson Beale [00:32:27] Yeah, I think that. I thought that was very interesting in your book when you were talking about that, that whole idea of sort of judging, and you can correct me if I don't characterize it appropriately, but judging our success and judging our children's success according to what they do or what they achieve, I think that's a very American thing. Just the whole work ethic, individualism, pull yourself up by your bootstraps. And then I also think that's a very Mormon thing. So that, to me, seems like it could be a great combination where you could have people that work very hard and are successful, although, you know, by whatever definition, but it could also be on the other side of that, a real dangerous cocktail, I guess, because, you know, in the Mormon Church, I think we have, and maybe even particularly for women, kind of this checklist mentality.

Heather Olson Beale [00:33:22] And then we even have the whole, after grace, you are saved, after all that you can do. I'm from the south, so that's a big thing that I sort of had to engage with, is lots of other people here saying, it's just grace. It doesn't matter what you do, because you just need to accept Jesus Christ as your personal savior. And he makes all that up. And then we have. There is that grace, because we're never going to be good enough. And so we always need him to Kind of make up the gap. But you need to have done this, this, this, this, this, this, this, you know?

Kathryn Soper [00:33:51] Yes.

Heather Olson Beale [00:33:52] So that seems like sometimes it could be, like I said, a very not good orientation where rather than valuing people for who they are, we're valuing them for what they do.

Kathryn Soper [00:34:06] What they do. Yeah, absolutely. I think that the kind of. The kind of values that we perpetuate in Mormon culture in the United States can very easily lead to illusions, half truths, and outright falsities about life, people, the universe, everything. You know, it's very easy to have your.

Kathryn Soper [00:34:35] Your vision askew and, and have your mind darkened when you are believing these fundamental things about the value of human beings. And. And you're wrong. You know, if you have. Like I had, I'll stop saying you and just say I. You know, I had a way of evaluating people. I had a way of ranking people. I had a way of judging myself and others.

Kathryn Soper [00:35:05] And when I came to find out that that was all just based on fallacy, that was a huge, Just enormous sea change in my life. And all of the kind of constructs that I had in my mind, my whole framework for understanding the world just kind of crumbled. And I had to find a different one, you know, build a new one.

Kathryn Soper [00:35:33] And it's been wonderful. It's been exhilarating. You know, I'm finding that the truth is so much better than the lies we tell ourselves when we're scared. You know, we tell ourselves things, we make up, we make up stories, we construct these narratives about why things are the way they are and how things actually are, and we do it because we're scared, and we're trying to make sense of a complex and frightening world.

Kathryn Soper [00:35:59] But what I'm continually finding every single time, is that as those illusions fall away, even though it's painful, and you're left kind of raw and naked and vulnerable, without that protective covering that's helped you to feel safe, that the truth is actually much more beautiful and much less frightening than we tend to think it will be. You know, we hide from it, but it's actually far better than what we invent in its place.

Rethinking Achievement and Raising Happy Children

Heather Olson Beale [00:36:31] Okay, so I'm interested. So you're saying that you sort of ditched that idea, that whole, like, achievement, like, meritocracy thing, and replaced it with something else. So, like, in terms of the way you look at your kids, could you characterize or yourself how you. How you go about evaluating or, you know, or assessing yourself or your kids? If it's not according to that?

Kathryn Soper [00:36:57] Sure. Yeah. You know, I don't know how succinctly I can articulate it because it's. It's still something in process and.

Heather Olson Beale [00:37:04] Right.

Kathryn Soper [00:37:05] And that's a pretty complex thing. But at the most obvious level, the way I regard my children and my dreams and hopes for them have everything to do with how they feel and who they are. It sounds like such a terrible cliche, but it's true. How they feel, who they are inside. I have pretended to believe that for a long, long time, and I can't claim that I fully converted. You know, I'm sure there are still parts of me that are hanging on to these false ideas of what really matters and that those will be, you know, stripped away as more experiences come to me in life. But certainly there's been enough of a change for me to be able to turn around and look and say, oh, that's what I believed before. And I'm not there anymore.

Heather Olson Beale [00:37:58] Okay.

Kathryn Soper [00:37:59] When I had. You might remember in the book, the conversation I had with my daughter Elizabeth, who was. Her grades were starting to fall, and I got very, very uptight about that because she, from very early childhood, has just been tremendously gifted and so full of potential. And I was so angry at her, you know, to have so much potential, you know, especially compared to her new baby brother, who had so little potential by comparison, as far as academics goes and how she was, you know, she. She couldn't throw it away. She couldn't waste that ability. She couldn't. And I was determined to compel her to.

Kathryn Soper [00:38:45] To make certain choices, to live her life a certain way. I was just determined. This child has got to do X, Y and Z in order for her to be happy. And in order for me to be happy, you know, she has to take.

Kathryn Soper [00:38:58] There was a scholarship that she was working towards for a time, and I just could not conceive of her not pursuing that scholarship. I couldn't conceive of her not going to college. Just these things I was so absolutely sure had to happen to secure her happiness and mine all of a sudden just kind of fell away. And it was really a dramatic experience to hear these things coming out of your mouth that you realize you don't believe anymore. And to just stop kind of mid sentence and say, oh, my Gosh, up until 10 seconds ago, I would have looked you right in the eye and told you that if you do not go to college, a good college, and do well there, that you could not be happy and that I could not be happy as your mother.

Kathryn Soper [00:39:50] And then that to have that just kind of collapse and to realize that has absolutely nothing to do with true happiness is just a revolutionary experience. You just never the same after that. What it has done for me as a parent is removed. I would say somewhere between 3/4 and 5,6 of all my anxiety as a parent because previous to the adjustment that came after Thomas birth, I again had these ideas of how things needed to be and what happiness was and what mattered and how to get it, how to be successful in life.

Kathryn Soper [00:40:37] And in order to have these things, I had to not only push myself really hard, but push other people. I was very much a micromanaging kind of mother who was intensely concerned about all the different facets of her children's being every hour of the day.

Kathryn Soper [00:40:56] In fact, I often felt like I was kind of living their lives as well as mine. You know, I was emotionally in their heads and in their business constantly because I thought that's what a good mother did. I thought that a good mother ensures that her children are doing what they need to do to be happy.

Kathryn Soper [00:41:17] And that has changed dramatically for me. And my approach is much more about trusting the innate goodness in my children and also the need for them to learn by experience. And it's just become so clear that they're not, you know, these.

Kathryn Soper [00:41:38] These empty hard drives that you need to program with all the right things in order to function a certain way and be successful. They are already good. You know, they already have this amazing divinity, goodness, potential intelligence within them. And I think it's much more a matter of facilitating that when it's truly helpful, and the rest of the time kind of staying out of the way and letting them become who they are, rather than feeling that you have to make them into something.

Heather Olson Beale [00:42:06] Wow. But I do see, I think that there's. I think that that idea is definitely encouraged in lds. Maybe not theology, but culture. The idea that sort of like, you're on this track and we have a plan for you. I mean, my husband has told me that he felt. I mean, I think it's maybe worse in some regards for men because of the whole mission thing.

Heather Olson Beale [00:42:27] He feels like his whole life was on this sort of track that had been laid out and sort of chosen for him before and that he really didn't have a hand in it. He could have. He could have deviated from it. And some people do, but, you know, and my youngest son is seven, and, I mean, he's little, so who knows? But he's already told us numerous times he doesn't want to go On a mission. He's told us that. And then a couple years ago, he used to tell us too, he didn't want to get baptized. Now that's about six or eight months away. But he's, I mean, he, he's just very anxious about everything.

Heather Olson Beale [00:43:00] I always say he's like nervous Nelly. Any new person, a new room, a new. I mean, he's, he's very tied to his routine and he doesn't like new things, new people. But, you know, he said before, well, do I have. Am I gonna have to get baptized? And we're just like, no, you know, you know, do I have to go on a mission? And I said, no. But then I've also told him, now he's seven, and I'll say, no, you don't. Of course, you know, but at some point he needs to become aware. And I'm not gonna, I would not definitely push him, but I think he needs to be aware that, that, that choice has some.

Heather Olson Beale [00:43:35] Can have some real detrimental consequences. I mean, I'm. I think it's bad that it's that way, but I mean, I was at BYU and there were like, you know, two boys in my entire ward for my freshman year that didn't go on missions. And they were like pro pariahs. I just remember feeling really sad for them and thinking, you know, I have no idea why they didn't choose to go. But, you know, it seems like we do have all these things that you're supposed to do, and if you don't, it raises these little red flags like, what's wrong with you? Or, you know, or if someone has, you know, John lots of times talks in his interviews about people who've had a faith crisis.

Heather Olson Beale [00:44:13] I think there's this idea too where if someone, someone's testimony starts to fault or whatever we want to say, like, well, what have they been up to? Or what have they been doing? Because you couldn't, it couldn't just be, you know, they must be doing something behaviorally or they must be addicted to porn or, I mean, you know, I'm exaggerating, but like you said, we want

Kathryn Soper [00:44:33] the comfort of cause and effect.

Heather Olson Beale [00:44:35] Yes.

Kathryn Soper [00:44:36] We want things to be predictable. We want to be able to look at them and say, well, that happened to them because of X, Y and Z.

Heather Olson Beale [00:44:41] And so it won't happen to me.

Kathryn Soper [00:44:43] And so it won't happen to me. And it's same. This is, this is why I have a hard time with you're such special parents thing. I think that that's. That's the cause and effect kind of model that we hold up to comfort ourselves that it won't happen to us because we're not nearly special enough to have a kid with disabilities. You know, those are those parents over there, you know, the special ones. And I'm not one of them, so I'm safe. You know, God would never give me one of these babies. Wow. Until he does. But I don't know, I just think about the time when we took Elizabeth to get her patriarchal blessing, and the patriarch had us come in and sit down and he looked at us and said, okay, I want to hear what you value and appreciate about your daughter.

Kathryn Soper [00:45:33] And so this was after Thomas had been born. This is after my perspective had already started to shift. And so I looked at Elizabeth and she's just kind of overflowing with talent. I know that sounds just so boastful, but that's just how it is. She's just that kind of kid. And I thought about all of her many gifts and capacities, you know, way beyond her academic intelligence.

Kathryn Soper [00:46:02] She has so many gifts. And so I started talking about those, you know, naming them, listing them off and, you know, times going by, and I'm still listing all these things that are wonderful about my daughter. And at the end, it felt so good to look at her and say with complete sincerity, you know, may God strike me dead if I'm lying. But honey, these wonderful things about you are not why I love you. I love you because you are my daughter, period.

Kathryn Soper [00:46:39] And it meant the world to me to be able to say that sincerely and to know in my heart that if she could have only done one tenth of what she's capable of doing, I wouldn't love her any less or any differently.

Kathryn Soper [00:46:56] And that's just an amazing feeling. You know, you're feeling like you're finally starting to get it. You're finally starting to understand what this crazy life is all about. And it was a. I think it was a really powerful moment for both of us and one that I know I'll never forget, especially, especially for the daughter who's been kind of a superstar in so many ways.

Heather Olson Beale [00:47:23] And you would say that you were able sort of to come to that conclusion, at least in part because of your experience with Thomas.

Kathryn Soper [00:47:30] Yeah, yeah. Because with Thomas, I had this opportunity

Heather Olson Beale [00:47:36] to

Kathryn Soper [00:47:38] know what it was to love a human being without having achievement based expectations linked and kind of mixed up with my love for them. I think, you know, it's so easy to love our brand new babies. You know, there's just this purity and this intensity of love for them. And we have so many hopes and dreams for them and so many ideas about their potential, and we just, we just love them.

Kathryn Soper [00:48:12] And it doesn't take long for us to start to have kind of our pure love mixed up with our own needs and wants and expectations as their parents. And by the time, you know, a kid is school age, we've all got a whole bunch of ourselves mixed up in the way we approach our kids. You know, our own needs are really evident in how we address their needs.

Kathryn Soper [00:48:46] And that's we all do it. I do, you know, I still do it. In saying all of this, I certainly don't mean to give the impression that I'm some enlightened individual who's figured it all out. All that I have figured out is that the truth, the reality, is much different than what we think it is. And I'm just barely starting to catch glimpses of it myself. That's all that I can claim to know.

John Dehlin [00:49:14] Thank you for joining us today on Mormon Stories. To comment on this episode or to provide feedback, please check us out@mormonstories.org if you want to help keep Mormon Stories alive, please consider either making a financial contribution or spreading the word about this episode through your blog, Twitter account, Facebook page, family newsletter, or through your Ward Bulletin and Ward newsletter. Just kidding about those last two. Music on this episode was provided by Clayton and Sky Pixton. Check them out@claytonpixton.com or skypixon.com that's sky with an E S K Y E pixton.com thank you.

Thomas's Birth and Initial Diagnosis

Part 2 of 3 · Ep. 193

John Dehlin [00:00:00] Mormon Stories podcast takes a ton of work and depends solely upon listener support to keep this program alive. Please consider a donation today@mormonstories.org.

John Dehlin [00:00:18] Wow. Okay, so take us back a little bit to before Thomas was born, I guess. Was there anything. Was there anything noteworthy or unusual about the pregnancy other than that you already had six kids? Like, that's noteworthy to me. That's like, salute worthy for me. Did it feel like there was anything unusual about it?

Kathryn Soper [00:00:40] Yeah. Yeah. In fact, I don't think this had anything to do with him having down syndrome. I think it was because it was my seventh pregnancy, but it was by far my hardest pregnancy. I was exhausted beyond exhaustion. You know, that first trimester, a lot of women just get this bone deep fatigue. And I had had that with all of my pregnancies, but with Thomas, it was just exponentially more where I felt my body just struggling like I could. It's like I could hear.

Kathryn Soper [00:01:23] Hear my own body fighting to create this new body and keep myself, you know, awake and alive and moving at the same time. Wow. And I. In fact, I had a really strong impression early on in the pregnancy when I was kind of berating myself for not being able to do anything. You know, I couldn't even walk up the stairs without pausing to rest several times.

Kathryn Soper [00:01:52] And the thought that just kind of came to me, it was like myself talking to myself. And the message was, hey, we can grow this baby as long as we don't have to do anything else. And that's kind of how it was throughout the pregnancy.

Kathryn Soper [00:02:10] Just, I was very limited in my. In my day to day functioning. I wasn't ill. You know, there wasn't anything wrong per se, but I was. I just had very, very little to offer beyond breathing, you know, staying alive. And then I went into labor very early.

John Dehlin [00:02:28] Okay.

Kathryn Soper [00:02:29] Yeah.

John Dehlin [00:02:29] How many weeks along were you?

Kathryn Soper [00:02:31] I was 28 weeks when my labor started. And that was just terrifying. Probably one of the scariest things. Absolutely one of the scariest things that's ever happened to me. I was sitting on a bench with my neighbor because I was so early on that and my water hadn't broken. And so part of me was kind of hoping it was just false labor. And so instead of having Reed take me to the hospital, I had my neighbor take me so Reed could stay home with all the other kids. And we were sitting on this bench next to the nurses station, and I was having these contractions, and I felt like when I felt my uterus contract, I was feeling that same oxytocin.

Kathryn Soper [00:03:23] Let Down. Like when you're breastfeeding and your milk lets down, there's that certain trigger, that hormonal trigger in your body. I was feeling that with every contraction, and I knew that I was actually in labor, and I was just so terrified. It was just way too early. It was three months early.

Kathryn Soper [00:03:42] Thankfully, they were able to stop my labor for two weeks. I was in the hospital on bed rest for two weeks before my water broke. And Thomas was born that night.

John Dehlin [00:03:53] So you were already sort of extra exhausted when he was born.

Kathryn Soper [00:03:57] Yeah. And I knew this was the last baby I was going to have.

John Dehlin [00:04:02] Okay.

Kathryn Soper [00:04:03] In fact, before we even knew he had down syndrome, I knew that I was not gonna ever have another baby.

John Dehlin [00:04:10] Okay. You just had a sense. This is. This is when they are family.

Kathryn Soper [00:04:16] Yeah. When they pulled him, pulled him out, and, you know, I never got to see him or hold him before they. They kind of passed him through the window into the newborn icu. And when. As soon as he left my body, I just started hysterically crying and just absolutely knew that my body could never go through that again. Absolutely not.

John Dehlin [00:04:43] Okay. Yes. And that didn't have anything to do with him having down syndrome, because you didn't know that at that point, Right?

Kathryn Soper [00:04:50] Yeah.

John Dehlin [00:04:50] Okay. So, well, just sort of walk us through finding out that he had down syndrome.

Kathryn Soper [00:04:58] Okay. We had been extremely frightened and tense about the very high possibility that the baby would be born with severe respiratory issues. So we had been kind of mentally preparing ourselves for that. And our. Our sixth baby had been born with premature lungs, and we had a really scary experience with him. So we were kind of having all these flashbacks and a lot of really strong fear about what the baby's condition might be when he's born.

Kathryn Soper [00:05:32] And so when that period of time when they had him in the NICU being evaluated, and Reid and I were still in the birthing room just waiting, and I was just weeping uncontrollably and shaking and unable to calm down at all.

Kathryn Soper [00:05:50] What we were expecting was for them to slide open this. We called it the drive through window because it was exactly like a drive through window to slide open this window between the birthing room and the NICU and to give us some pretty dire news about the baby's health, specifically his respiratory health.

Kathryn Soper [00:06:10] And so when the nurse slid open the window, you know, Reid and I were both extremely tense and just kind of bracing ourselves. And the nurse, to our great surprise, smiled and told us his APGAR scores, which were tremendous, and said that he was breathing room air on his own. They didn't even have a nasal cannula with oxygen on him at that point, although he ended up needing it shortly thereafter. But at the very start, his respiration was normal enough that they weren't doing any sort of support for his breathing. And Reid and I were so amazed and just so grateful and just relieved.

Kathryn Soper [00:06:57] It's like this huge burden had been lifted. And we were just looked at each other and kind of smiled and started to laugh a little and just could not believe our good luck. And that was the mood that we were in.

Kathryn Soper [00:07:13] Just starting to kind of downshift from this whole crisis that had been going on for several weeks when these two doctors came into the birthing room and stood by the foot of my bed. And I knew right away that something was wrong, because it was two doctors and not just one. And they had these very solemn looks on their faces, and they said, we. We believe your son has down syndrome.

Kathryn Soper [00:07:41] And Reid and I just. You know, there's just the shock. You know, the words come out of their mouth and kind of float around the room, you know, and it just. It's completely surreal to hear. To hear doctors say that about your child.

Kathryn Soper [00:07:58] It's. I don't think either one of us felt anything, even the barest beginnings of any reaction to that for a few hours. And it took days for it to really start to sink in, and it took months for it to really, really start to sink in. As far as the implications for the rest of our lives.

Kathryn Soper [00:08:23] It was a gradual kind of process of absorbing this. This news. And that initial period of shock, I was really hopeful that. That I was going to really be okay and not fall apart. You know, I was kind of proud of myself and thinking, oh, I'm. I'm doing really well. You know, I'm okay. I'm fine. And we went to sleep that night, like, at 3 or 4 in the morning, just still in this total state of denial. You know, we had gone to see Thomas. We had held it. I had held him for a few minutes and everything. So it's not like we hadn't seen him and touched him.

Kathryn Soper [00:09:06] But I don't think for either of us, we were really acknowledging. We weren't able to really acknowledge what we had been told until we woke up the next morning. And then that was kind of like, you know, the universe falling apart.

Kathryn Soper [00:09:22] Just all of a sudden, you open your eyes and you remember what happened the night before, and it just hits you that there is this. This reality that you did not. Do not want, you did not ask for you do not want to. Have to deal with. And you have no choice. You know, it's there, and you have to. You have to deal with it. You have to wade through it. And that was. That was a really hard thing to wake up to, put it that way.

Telling Family and Sharing the News

John Dehlin [00:09:55] So, I mean, did you have. I'm assuming, you know, I've had three kids. People calling, or you sort of had people that you felt like you needed to call and share the news with. Yeah. So what did you guys do? What did you do with that? Did you avoid it? Did you. I don't know.

Kathryn Soper [00:10:14] Yeah, that's a good question. I called my mother first because she had been home with the other kids all night waiting to hear. She didn't even know the baby had been born yet. We didn't call her right after he was born, and so she was waiting to hear the news. So I called her, and, you know, the first thing I told her is, okay, Thomas has been born. And I was giving her kind of a health report. That was her first questions were, you know, how is he doing? How's his health? And she, as well, was so relieved by this good news that as far as his lungs were concerned, he was.

Kathryn Soper [00:10:47] He was doing okay. And so then I had to tell her the second piece of news and, you know, tell her about his diagnosis. And it was so difficult. It was so difficult to say those words. It's like every one of them weighed a thousand pounds just stuck in my mouth. And to say it out loud was.

Kathryn Soper [00:11:13] It was a really difficult thing to do. It got somewhat easier with repetition. But for those first couple of days, every time I had to tell somebody, it was kind of agony all over again.

John Dehlin [00:11:34] Okay, so talk to us a little bit about talking to your kids, your older kids about that.

Kathryn Soper [00:11:43] Well, we had a conversation with the geneticist when Thomas was still very, very newborn. And the geneticist. We had not done the chromosomal karyotype test yet, and the geneticist was telling us, okay, we're going to order this blood test.

Kathryn Soper [00:12:09] But, you know, I'm not so sure. I'm not convinced that he has down syndrome. And Reid and I were sitting there kind of looking at each other like, what? And he said, you know, it's not a done deal yet.

Kathryn Soper [00:12:25] And so we did not want to tell the children until we knew for sure what the diagnosis was. So Thomas was a few days old when we told them, and we had plans to kind of tell them all together in, like, this family council meeting where we would all sit and say, just the right things.

Kathryn Soper [00:12:47] And it was all just going to work out wonderfully somehow. And I was preparing for that. I was reading all of this, the handouts and the pamphlets and the other information the hospital sent me home with. I was reading all that, searching for something that would help me tell my kids what had just happened in our family.

Kathryn Soper [00:13:11] And I just. I did not know what to do. I wasn't sure how to frame it. I didn't know what to say. I very much wanted to say the encouraging Mormon mom kind of things about what a blessing this was, and Heavenly Father was blessing us, and we were just so blessed and blessed. Blessed, blessed, blessed, blessed. But that's not how I felt. And I didn't know whether to lie, you know, or what to do. And at that point, my son Ben came in the room and he saw what I was reading. I kind of tried to hide it, but I was pumping breast milk at the time.

Kathryn Soper [00:13:45] And, you know, that kind of limits your ability, your movement. That's right. And he saw. He saw what I was reading and read the headings on one of the pamphlets and just said, why are you reading this?

John Dehlin [00:14:03] How old was he at the time?

Kathryn Soper [00:14:06] He was. Gosh, he was 11.

John Dehlin [00:14:11] Okay.

Kathryn Soper [00:14:12] He was 11. And he was. He's an extremely emotionally sensitive kid. And just the look on his face when I told him, yeah, Ben Thomas has Down syndrome. You know, this is when we had gotten the phone call from the geneticist saying, yes, he does have down syndrome, for sure.

Kathryn Soper [00:14:36] I forgot to tell you that part. And Ben, you might remember this from the book. Ben was. He was so devastated and he wanted so much to not be devastated. And that's exactly, exactly how I felt myself. It was this mix of grief and then rejection of your own grief. You did not want to be grieving. You know, you're ashamed of yourself for feeling the way that you feel. And so it's not just the pain of the grief itself, but also this kind of meta level reaction to your. To your feelings, your feelings about your feelings.

Kathryn Soper [00:15:20] And he was so stuck. I could see it in his eyes where he wanted to be brave, he wanted to be mature, he wanted to say the right things, but he just, he was shaking and he just said, mom, I'm so sorry, but I would rather not have a retarded brother.

Kathryn Soper [00:15:41] I'm so sorry, but I just. I would rather not. And that's exactly, that's exactly how I felt too, you know, I would rather not have this child. And I am so sorry that that's how I feel about Was like, this terrible realization that in my heart of hearts, I really did think and feel and believe things about disabled people, which now included my own son that I was ashamed of.

Kathryn Soper [00:16:19] It was awful to have to look that straight in the face and confront my own. My own fears, insecurities, my prejudices, my biases, my immaturity, basically.

John Dehlin [00:16:31] But so were you able to tell him, you know, I know what you mean, or what did you do with that at that point, Were you still trying to be stoic? Because, like, as an outsider, I can think that I would be able to say, oh, yeah, I feel like that, too. But then I'm thinking I probably wouldn't want my own kid to own up to that either.

Kathryn Soper [00:16:50] It was. It's definitely something we could do down the road a bit. You know, we could. We could very much validate their emotions in a very calm way. But in the moment, my own distress was so overwhelming, I was just barely, barely keeping it under the surface so that I could, you know, be a somewhat normal mom to my kids and they wouldn't be wondering what was wrong with me. I was worried that if I acknowledged. If I opened the door on that, even just a little bit, it would all just flow out and drown my kid, who needed me to be supportive of him somehow.

Kathryn Soper [00:17:32] And so, you know, I put my arm around him and hugged him and tried to console him and told him that someday we would look back on that, that very day, that very moment, and wonder why we ever cried about it. And I. And I really. I did believe that that was true. I did believe that at some point, we would probably look back from a very different perspective and say, wow, we were really.

Kathryn Soper [00:17:56] We were so sad about Thomas's diagnosis. But, you know, now we know so much more than we did then, and we don't feel the same way, quite the same way that we did before. But as far as acknowledging my own emotional agony, I couldn't do it for a long time with my kids.

Coming Home and the First Year

John Dehlin [00:18:17] Okay, so what was it like when they. How long was he in the hospital before he could come home?

Kathryn Soper [00:18:22] He was in the hospital for six weeks.

John Dehlin [00:18:24] Okay, and so then what was it like when he came home?

Kathryn Soper [00:18:30] Oh, it was. It was overwhelming. It was chaotic. Reed's parents had been in town for three weeks. Well, my mom was in town for the first few weeks, and then Reid's parents came when she had to go home. And so the whole time Thomas was in the hospital, we had grandparents here at the house, you know, running the household on our behalf, taking care of the kids, but they had to go home right before Thomas was released. And so, you know, in some ways it's like the end of the crisis. You know, he's getting out of the hospital, and it seems like this is such a big turning point.

Kathryn Soper [00:19:06] But in a way, the crisis is just beginning because when you're in the hospital, it's a very controlled environment and your responsibilities are really limited. And you're also able to separate that piece of your life from the rest of your life at home. And to kind of have those two worlds collide was.

Kathryn Soper [00:19:29] Oh, man. I don't even think there's. I know a word for it. It was beyond overwhelming. It was to the point that I had to shut down emotionally pretty much completely and just be like in this kind of robotic survival mode in order to just be able to keep putting one foot in front of the other. I couldn't feel anything. I couldn't let myself feel anything for a long time.

John Dehlin [00:19:55] So how would you say that it was, or would you say it was the same as having. When you brought your other children home? I mean, that to me was overwhelming and hard, and my kids didn't have any particular health problems. Was it the same as in some ways, or was it just totally different?

Kathryn Soper [00:20:15] It was. There were aspects of it that were very much the same. Just the. In fact, in a way, it felt a lot like bringing my first baby home when I had absolutely no clue how to take care of a baby. And that was just terrifying. And I felt the same way about bringing Thomas home. I didn't know how to take care of him. I was afraid to get him out of his car seat when he woke up and kind of started crying a little. And I knew I had to pick him up and start taking care of him. And I was terrified to pick up my own kid. And he was my seventh kid. I could take care of babies, you know, half asleep or.

John Dehlin [00:20:56] Right.

Kathryn Soper [00:20:56] It had just been something that I'd grown so accustomed to. But he was like starting over all over again as far as my sense of insecurity. And we had medical issues, which complicated things. We had. He came home with nasal gastric tube, you know, up his nose, down into his stomach. That was how we gave him his feedings. We had to shoot breast milk up his nose with a syringe to feed him. And he also needed supplemental oxygen for about three months at home. And so we had this bassinet set up by the side of my bed. And there were these 5 foot tall oxygen tanks strategically positioned behind the bassinet.

Kathryn Soper [00:21:39] And on my bedside table was the hospital breast pump and the oxygen monitor, which sounded its alarm, you know, day and night with the slightest fluctuation in Thomas's blood oxygen saturation, it would sound an alarm. And it was just.

Kathryn Soper [00:22:03] It was very much the same and yet utterly different than all the other homecomings that we had. And I look back, you know, describing it right now, I look back, I'm just sitting here kind of shaking my head and just. I can't believe that. That we lived through that.

John Dehlin [00:22:20] Wow.

Kathryn Soper [00:22:20] But. But we did. You know, you just do. Either you die or you live through it. And since we didn't die, we live. We lived through it.

Faith Struggles and Doubt in the First Year

John Dehlin [00:22:31] Well, so you've taught, and you talk in the book, too, about sort of about, like, faith issues and God's hand in all this, but I'm just thinking or wondering whether at that time you were either feeling like, oh, I'm relying on my belief in God to sustain me, or, I mean, these are two ends of the spectrum. I'm sure there's lots of gray. But it seems like when people have a crisis like that, they either do that. They cling to. And I don't use the word cling in a negative way. They rely on their belief in God to help them make sense of it and sustain them, or they reject it because it's kind of like they can't. Their idea of God won't allow for this terrible thing to have happened to them. Does that make sense?

Kathryn Soper [00:23:18] Yep. Yep.

John Dehlin [00:23:19] So did. Would. I mean, does that seem like an appropriate characterization? Or would you say you were. That it was more complex than that or that that is not accurate?

Kathryn Soper [00:23:29] I would say that I felt both of those ways at the same time. Okay. And that was actually, if I had to pick one aspect of that first six months that was the most difficult, it would be the experience of having completely opposite, seemingly mutually exclusive thoughts and feelings and beliefs simultaneously.

John Dehlin [00:23:56] Okay.

Kathryn Soper [00:23:57] Where, you know, I. I'd read two Nephi dozens of times and could quote you all the scriptures about the importance of opposition. But I kind of understood opposition as a principle to refer to how we fluctuate between opposites, between contradicting realities that you can feel. You can have mixed feelings about something, but you're going to feel happy about it at one point and. And then you might feel sad about it the next day or the next hour. What I had never consciously experienced before was feeling both at the same time, feeling contradicting emotions, believing completely opposite truths about a given situation simultaneously. I don't know how else to describe it, but I really wondered if I was losing my mind.

Kathryn Soper [00:24:54] I really thought that there was something wrong with me. And I kept trying to figure out which of the two was real. Is it really this way or is it really that way? Do I really feel this way? Do I really believe this or do I believe that? And it took a good half a year before I started to realize that they were both true at once. Equally true.

Kathryn Soper [00:25:14] And so as far as regarding my faith, it totally turned over the apple cart. Very much so. At the same time, there were still beliefs that I was hanging on to. And I, at that time, still found ultimately a degree of comfort in the idea that God had planned all of this for our ultimate good and our well being and that somehow it was all going to be okay.

Kathryn Soper [00:25:47] At the same time, I really was angry and hurt that God had purposefully given me an experience that was exposing all of my weaknesses and flaws and limitations. It's like God's supposed to be this great guy who helps you out. Instead he's like punching you on your bruised arm over and over and over again. And. And it's like I felt like he was setting me up to fail.

Kathryn Soper [00:26:17] Like he had given me this child and he was basically asking me to do the impossible. He was asking me to love a child that I couldn't truly love and that I was going to. This was a test, that I was going to utterly fail and that he was setting me up.

Kathryn Soper [00:26:37] As irrational as that sounds, that's how I felt. So I still believed that he was pulling the puppet strings. I was just starting to really resent the moves that he was making in my life at the moment. And by the end of that first year, that changed very much. Where God was off the hook for the most part. Where I no longer believed that he had foreordained this experience for me or predetermined it, that it was not fated, it was not an inevitable thing, that he was not micromanaging my life, my family. And that was an extreme relief. To be able to let go of holding God responsible for everything that happens

John Dehlin [00:27:29] in life, that was liberating.

Kathryn Soper [00:27:32] Very much so, because when you believe he's responsible, then you have to reconcile all of these realities with a loving God. You have to figure out, well, okay, so why did he let this happen? If he's in charge and everything that happens is his will, then that means he wanted this and that and the other thing to happen. And you have to do these mental gymnastics to reconcile, to reconcile that within yourself, and it's incredibly painful. And when something happens to you that you can no longer reconcile, that's when. That's when that belief kind of breaks down.

John Dehlin [00:28:11] Yeah. What I'm hearing, I feel like, anyway, you say sort of over and over, is that, yeah, we crave these sort of neat and tidy explanations and solutions. And that. That seems like a big sort of maybe lesson or takeaway message, at least from my interactions with you and from reading the book, is that it's actually a lot more complicated and that we want to control things that we can't control, or we want to think that God is controlling things when maybe it's not exactly the way we thought. You know, I mean, it just feels like a much more sort of universal or like life is just lots more messy, messier than we would like to admit.

Kathryn Soper [00:28:52] Yeah, I think messier and simpler at the same time. You know, it's. It. I think that when you let go of all of these safety measures that you think are necessary and that requires so much energy and focus to maintain.

Kathryn Soper [00:29:11] You know, like the thought that if you believe that your children have to be a certain way in order for them to be happy and you to be happy, you're going to invest a whole lot of yourself in making that happen. Because you're driven by fear. You're terrified that it's not going to happen, and you're going to do everything you can to make it happen.

Kathryn Soper [00:29:29] And when you let go and you realize that, A, you can't make it happen, and B, you don't even want to make it happen because if you make something happen, you're taking it away from the person who's in charge of themselves.

Kathryn Soper [00:29:47] You free up all of this obsession, all of this focus on controlling what can't be controlled and what shouldn't be controlled, and you're able to kind of relax and surrender and live according to what is actually true rather than the truth, you feel like you have to create through your own determination and hard work.

Kathryn Soper [00:30:14] And that's. It's an enormous relief. It's frightening to realize, oh, my gosh, you know, I'm not holding the reins really, after all. But it's also. I have found it to be extremely liberating and would never go back. Never go back to the old way of thinking.

John Dehlin [00:30:32] Wow, that's powerful. Well, I'm going to tell you just one story, and then I'll ask you some questions about when Thomas was born and stuff. So I read your book a few weeks ago, and I was Thinking as I was reading all that stuff about your kind of perception, your experience with your kids, that was sort of like feeling like, ooh, the guilty taketh the truth to be hard.

John Dehlin [00:30:53] Last week, or I guess it was the week before we ended school here and I had this class I was doing. So I couldn't go to my oldest daughter, the awards ceremony at her school, but they had sent us a letter saying that she was going to get an award as she always does. I mean, every year for her. It's actually kind of embarrassing to me to go. I mean, I'm happy for her, but at the same time I'm kind of thinking, gee, like, was there any meeting where you guys sat around and said, okay, well she's already gotten four things, so like, let's share the love.

John Dehlin [00:31:21] I mean, it's sort of like cringe worthy for me. Yeah. But I couldn't go. Which was another like mom juggling moment. I felt really bad. But my husband went and he sent me a text and told me that her and this other girl that's the son of some friends of ours won like the best seventh grade, this the best seventh grade, this the best that. All those things, the two of them sort of went back and forth and won all of those things. And so he was saying, oh, I was really proud of her or whatever. And I was thinking of, oh, I'm proud of her too.

John Dehlin [00:31:47] But I had like your book in the back of my mind thinking, oh, and why, why are we so proud? Because she's getting all those things, you know. And he, my husband said, well, I was telling them, these friends of ours, that we should go out to eat and celebrate.

John Dehlin [00:32:00] And my husband likes to go out to eat. So he's, you know, it doesn't take much to have an excuse for him to want to go out to eat. But he told me that and I said, well, I'm happy to do that, but I have two thoughts. One our other two kids had, like, that was Wednesday. And then one kid was going to have their award ceremony on Thursday and the other one on Friday. And they were, I knew they were going to get things too. I mean, that maybe just sounds totally arrogant, but that I just knew they would. And I said, so we either need to go out three times or we need to just wait until the weekend and go out once.

John Dehlin [00:32:28] And I said, and actually, and I was totally thinking of your book. I said, we probably ought to just say we're gonna go out to eat and say you guys had such a great school Year. I'm like, because what would we do if we had a kid? Like, we can't say we're gonna go out to eat because Kennedy got seven awards at school, because then what if the other kids don't? Or what if they start counting? Or then you have this weird competitive thing between kids. And my husband was like, you know, you're right. That's a. Like, so there's that tension between me wanting to feel like, well, I want to congratulate her and tell her that I'm proud of her, but then also thinking, but I want her to know that I'm proud of her for other things or just for who she is and not only because she sort of cashed in at school, you know, it was kind of an embarrassing moment for me, though, to realize that that's sort of the way we've set it up in our minds.

John Dehlin [00:33:14] We're so proud of you. And then I was like, okay, well, let's just say school's over. And so everybody went and had a hamburger, you know? But it wasn't. We just changed in our minds what the purpose of it was. Yeah. So I was glad to have read your book and thought, oh, yeah, that hit right. That hit right close to home.

Kathryn Soper [00:33:31] It's a complicated thing. You know, there are always these two poles that you're trying to find kind of a delicate balance in between. And one is that you want to encourage and praise and congratulate your children for what they accomplish, and the other is that you don't want to send the message that their value increases commensurately with their accomplishments and that your love for them shifts according to their accomplishments.

Kathryn Soper [00:33:58] I think, really, the parents who truly believe that their children's academic achievements are not the only thing that matters in life will successfully send those messages to their kids. I think those of us who are in trouble are those of us who pretend like other things are more important. But our true beliefs leak out. They. They kind of leak out into everything we do because our kids and our kids kind of subconsciously absorb what our true values are based on our behavior. And, you know, what can you do? All you can do is to do the best that you can do, Right?

John Dehlin [00:34:45] Yeah. Well, a couple months ago, I came home from work, and our kids had had, like, their. It's the tax test here. There are several days of standardized testing, and my middle daughter, who's in the fourth grade, said, mom, oh, my gosh, I did that thing today that you told me absolutely never, ever to do, and I was Thinking, oh, this is not good. Like, what have I told her not ever to do? She's only 10. So I was like, did she say crap or stupid or. I mean, I don't. I mean, I don't know that I've told her that, but it sounded sort of dire, you know, And I said, do I want to hear this?

John Dehlin [00:35:19] And she said, yes. And I'm like, thinking, okay, I hope. Because, like, we've told her things like, my husband is better than I am at this, but he'll tell him things like, you know, oh, you got an 82 on something. That's great. It's good for you to miss some things because now, you know, you need to learn. You know, they'll be upset they can't get a B on something. You know, they're kind of uptight.

Kathryn Soper [00:35:38] But.

John Dehlin [00:35:39] So he's told them before, the only thing you're going to get in big trouble with us for is if you are mean to a kid. If we find out that you've been mean or unkind, you're going to be in big trouble. Or if you. If you maybe are just maybe if it's a sin of omission. So maybe you're not mean, but you still are, like, excluding another kid or whatever, you know, and we'll be disappointed in you if you sell yourself short. Otherwise, you know, we just want you to be happy. That's what we try to tell them anyway. So she said, well, I had already done all the math questions on my test two times, and I thought and thought I should go over and check my answers and do them all a third time.

John Dehlin [00:36:19] She said, and then I just wanted to read my book. So I just turned in my test, and so remember when you told me that I shouldn't sell myself short? I think I sold myself short. I just started laughing, and I was like, wow, we're dealing with big troubles over here in the Olsen Beale family. Like my daughter. I was like, maren, I think you're good. I think you definitely needed to go and read your Lemony Snicket book. And I think you'd already done the math questions 20 twice, you know, but, yeah, but then they were also happy because they came home with their test scores, which they.

John Dehlin [00:36:51] They give them out at school, which I find just totally bizarre and unconscionable. And they had missed one question. So she was saying, I only missed one question. And then I was in that boat again, where I was thinking, okay, so I. They want me to say, good. I'm so proud of you.

Kathryn Soper [00:37:07] Yeah.

John Dehlin [00:37:07] So I want to honor that. At the same time, I'm also kind of thinking I don't even care about that test because I think it's crazy, you know?

Kathryn Soper [00:37:14] Yeah.

John Dehlin [00:37:15] So it's hard to know how to react to your kids.

Kathryn Soper [00:37:17] It is.

John Dehlin [00:37:18] Give them the right praise or whatever and send the right message. That's hard.

Kathryn Soper [00:37:23] It is. It's really hard. And if, you know, we'll kind of trip up, and if we're too nervous about saying the wrong thing all the time, then. Then our kids wonder what's wrong with us because we can't seem to finish a sentence without, you know, backtracking.

Kathryn's Book and the Down Syndrome Memoir

John Dehlin [00:37:38] So let's. Let's talk a little bit about your book. Well, your most recent book. I have to qualify it, I think. I sent this to you in one of my questions as I was looking. I mean, I read this book the year my son and I were born. Your most recent. Was it published this year in 2010?

Kathryn Soper [00:37:57] The paperback was published in March 2010, and the hardcover was published a year previous.

John Dehlin [00:38:02] Okay. And then I told you, I read the Mother and Me, and then I went and looked online and read some of your blogs, kind of just so I could try to understand what other things you've done. And I was telling you that I'm. I'm in academia, and so we're supposed to say that we have, like, this cohesive research agenda, and it wouldn't be good if I were to have published things kind of all over the place, you know? So as I was looking, I was thinking, well, I wonder what you would say. You're. Do you feel like you have an agenda, or are there some themes that tie all your work together?

Kathryn Soper [00:38:30] Yes. Yeah, definitely. In fact, you asked about the epigraph to the memoir, the Kahlil Gibran quote that introduces the memoir. And I think that that sums up perfectly kind of the central theme of Everything I do.

John Dehlin [00:38:49] Can you read that? Do you have that in front of you?

Kathryn Soper [00:38:52] Yeah, I can quote it to you. It says, your pain is the breaking of the shell, which encloses your understanding. And I read that when Thomas was about, it was the summer after he was born, so he was around nine months old, and just hit me, like few things that have, you know, before or since, that the experiences that I had had with him, as well as the other experiences I've had in my life, which have been most painful, have also contained the seeds of positive change, transformation on a personal level, awareness and understanding, even enlightenment to some degree, that the hardest things the most difficult things have also been the most valuable experiences in my life.

Kathryn Soper [00:39:53] And so that tends to be a theme in everything that I do, whether it's writing about disability or depression or Mormon issues. There's always the intent of kind of digging around, digging beneath the surface of human experience to show what it's really like. What does it mean? How does it change you?

Kathryn Soper [00:40:21] With ultimately a very positive spin, that even our most painful experiences that we are reluctant to hold up as blessings still give us the opportunity to have our hearts opened towards other people. And so there is always a potential benefit and blessing there. I feel really strongly about that. Okay,

John Dehlin [00:40:53] so is the picture on the front cover of your book, you and

Kathryn Soper [00:40:55] Thomas, of the paperback?

John Dehlin [00:40:58] Yes, it is. Okay, so who would you say then, was the audience of your book as you were imagining writing it? Were you thinking, I'm writing this for myself. I'm writing this for these kind of people? Or did you even think of that at all?

Kathryn Soper [00:41:13] I did. You know, audience is a central consideration when you're writing, and I had a lot of struggles with that. It was a difficult question. I wanted to write for a national audience. I didn't want the book to be a Down syndrome memoir per se.

Kathryn Soper [00:41:36] I felt like the story of Thomas diagnosis and what followed that first year is kind of the surface story. But it's not really what the book is about on a. On a meta level. It's. It's about personal transformation. It's about confronting illusions, dealing with the fallout when they. When they crumble, rebuilding yourself, coming to know.

Kathryn Soper [00:42:07] Coming to know what is true through difficult experiences. It's not just about having a child with down syndrome. My publisher, of course, needed a marketing angle, and they have marketed the book as more of a Down syndrome focused book because there is a niche audience there.

Kathryn Soper [00:42:32] And so they've emphasized that aspect of the book, which is, you know, perfectly fine. But I do feel that it's written for a much wider audience than parents of kids with down syndrome.

John Dehlin [00:42:45] Okay. Yeah. Because I don't have a child with down syndrome. But I was reading on the COVID of your book, someone named Margaret Young, who, I don't know who that is, said that your book is for anyone coping with a hard surprise.

John Dehlin [00:43:01] And I thought, as I was reading it, I kept making notes out in the margin or just exclamation marks or. Yes. Or just little things like that. And I thought, I only have three kids. I shouldn't say we don't have any shared experiences, but it seems like in a number of ways, our lives are pretty different. But I kept thinking throughout the book, oh, yes, I agree with that. And so when I saw that little thing that it was for anyone coping with the hard surprise, I thought, well, there's a lot here that I can relate to, even though our experiences really are different. So it spoke to me on a lot of levels. I'm sure it has with a lot of other people as well.

Kathryn Soper [00:43:35] Well, I'm glad to hear that. That's exactly what I was hoping.

John Dehlin [00:43:39] Yes.

John Dehlin [00:43:41] Thank you for joining us today on Mormon Stories. To comment on this episode or to provide feedback, please check us out@mormonstories.org if you want to help keep Mormon Stories alive, please consider either making a financial contribution or spreading the word about this episode through your blog, Twitter account, Facebook page, family newsletter, or through your Ward Bulletin and Ward newsletter. Just kidding about those last two. Music on this episode was provided by Clayton and Sky Pixton. Check them out@claytonpixton.com or skypixton.com that's sky with an E S K Y E pixton.com thank you,

John Dehlin [00:44:31] Though like the wonder

Kathryn Soper [00:44:34] the sun gone down.

Mother Guilt, Grief, and Mormon Expectations

Part 3 of 3 · Ep. 194

Kathryn Soper [00:00:00] Mormon Stories podcast takes a ton of work and depends solely upon listener support to keep this program alive. Please consider a donation today@mormonstories.org.

Heather Olson Beale [00:00:19] Well, so there were some. I made a little list of some themes that I read about as I was reading the book I wrote about mother guilt. You talked about that a lot. You talked about feeling guilty, I guess, for feeling bad about his diagnosis.

Kathryn Soper [00:00:39] Is that fair? Absolutely.

Heather Olson Beale [00:00:43] You talked about feeling inadequate. You talked about exhaustion. You talked a lot about kind of God's hand in our lives in general. But in that. In the fact that you had a child that has down syndrome, did God want that for you? I mean, I think that's sort of part of Mormon theology, the idea that God is very involved and that if we have a challenge, it's for us to learn a specific thing. Right?

Kathryn Soper [00:01:13] Yes.

Heather Olson Beale [00:01:13] I mean, I was telling. I'm the primary chorister in my warden. I was telling the kids on Sunday, we were having a lesson about the Holy Ghost, and we do the music in our ward, very much, like, together. So we don't have singing time and sharing time. So I just stood up to do a part of this one song, and I said, I want to tell you guys this story about a time that I felt the Holy Ghost and that wasn't planned. I looked at the. Remember the primary presidency. I was like, is this good? And she was like, oh, yeah, that's great. So I said, I'm just going to be totally honest with you guys and tell you that I've never had an experience where I felt like there was a voice that told me, like, don't go there or turn around.

Heather Olson Beale [00:01:50] None of these safety stories. I said, I'm almost 37 years old, and I've never had that experience. I've heard other people tell. And 10 years or so ago, I may have felt kind of bad, kind of like, well, why have I, you know, why do these other people have these amazing stories where, you know, they get saved from a terrible train wreck or whatever? I've just never had that. So I told the primary kids that, and some of the teachers were laughing just like you are. But this is part of my, like, I'm totally honest.

Heather Olson Beale [00:02:14] And I said. And I have not really had very many experiences either where I would have felt awash with any sort of big confirmation or where I just really felt like this is right. I just haven't. And I said, I'm just going to tell you guys about one time, though, when I really felt like I was comforted. And I call this, you know, the Holy Ghost. So I was telling them that probably seven or eight years ago, my brother got married. We all were there. He and his wife got married in the Seattle temple.

Heather Olson Beale [00:02:39] My parents were so happy because all of us were there. We were there in the celestial room together. It was a very. It was a neat moment for our family. And then we left and they went to go to the reception and we took a bunch of pictures. And then we were going to follow them. And we got. My parents got in a terrible car wreck.

Heather Olson Beale [00:02:55] A Frito Lay truck swerved over into their lane, and my parents and my sister, they were all in the van. They had to come get the Jaws of Life and, like, cut open the door. And my sister's baby was, like, half hanging upside down in his car.

Kathryn Soper [00:03:07] Oh, my gosh, it was terrible.

Heather Olson Beale [00:03:08] So they took. And we were in the car behind them, so we saw it all. They took everybody in multiple ambulances. And I was like, calling my brother, who was halfway to Canada, saying, oh, my gosh, we're not going to come. Everybody's in the emergency room. It was terrible. So I was just saying, oh, my God. It started out as, like this great family day, turned to terrible in a big hurry. And then I was there with my dad, and someone came in. The doctor came in and said, Mr. Olson, are you aware that you have a golf ball sized tumor in your brain?

Heather Olson Beale [00:03:38] And my dad said, no. And my dad has had two other kinds of cancer, and he had his arm amputated, actually. So the doctor asked, you know, is that a war wound or whatever? He said, no, it's from cancer, but it's probably from 20 years ago. And so the doctor said, okay, well, this is. Then it's not related. You know, this is something totally new. And I was there, I don't know, it was seven or eight years ago. But I remember thinking, this needs to be one of my sisters in here. This needs to be my mom in here. But they were all off somewhere else.

Heather Olson Beale [00:04:06] And I was very upset. I mean, anyway, everybody flew home. He had surgery. And I was mad and sad. I was mad at God. And one of my sisters actually told my dad, hey, Heather said that she's mad at God. And so my dad sat me down and said, I don't want you ever to think that, because I'm not mad at all. I don't have one bit of anger. I just feel like I've had so many blessings, you know? So I felt kind of humbled by that. But I was just telling the primary kids that I got. I mean, for a couple months, it was very hard for me to just even go to work.

Heather Olson Beale [00:04:36] I felt like I could just cry at any moment. I'd be up teaching my students, like, the preterite versus the imperfect. My high school Spanish class or whatever, and I would just start to cry. And I said, one morning, I was reading out of this little book. It was one of these little devotional books of quotes by President Hinckley.

Heather Olson Beale [00:04:54] This story is totally turning long. I need an editor. Anyway, so I read. Maybe John will do that for us. I read this quote. I don't even remember what it was. And. And I just felt this totally overwhelming sense, like, everything's going to be okay.

Heather Olson Beale [00:05:08] And I said. And I didn't feel like this is going to go away. I did not have any thought that, like, my dad was just going to get well and this wasn't going to be an issue anymore. And that has not been the case. He's still alive, but it's still sort of there, just lurking around doing its nasty little thing.

Heather Olson Beale [00:05:27] But I said. And I felt like that was the spirit. I felt like I'm still very sad. I don't understand this, but I just felt like everything's going to be okay. And I told that to the kids. And then one little girl who's probably seven, I guess, said, see? Everything's for a reason.

Kathryn Soper [00:05:41] Oh, no.

Heather Olson Beale [00:05:42] When she said that, I was kind of thinking, wow, that was totally not the message I was trying to give you. Like, okay. Because then. And I didn't. I just said, okay. But afterwards, I thought, well, what did she mean by that? Because that almost implies that, like, the reason that we had that experience and my dad still has a brain tumor is so that I would learn, like, so that I could experience that manifestation of the Holy Ghost. And then I was thinking, I'm not really down with that. I mean, that little girl can think whatever she wants. But I just wouldn't want to say, well, yeah, well, that was worth it.

Heather Olson Beale [00:06:14] I mean, I could have done without that experience. And if I had to choose, I would say, yeah, I didn't need that. And we'll give the brain tumor back and the car wreck and all that. Like, we didn't really need that experience. But I thought it was interesting that a girl that young said that, see, everything's for a reason.

Heather Olson Beale [00:06:30] Because I'm like, is everything for a reason? I'm like, I don't know. Or does bad stuff just happen? I don't know. But you touched on that issue Feeling like, did God want me to have this experience? Did God choose me to have this experience? I don't know if you want to talk about that for a minute or not.

Spiritual Transformation Through Thomas's Disability

Kathryn Soper [00:06:47] Oh, sure. That's actually kind of at the root of kind of the spiritual change that I've experienced since Thomas birth. I used to very much believe in a microman managing kind of God. Very benevolent, of course, but a God who was a puppet master of sorts, who was all day long pulling strings one way or another for things to happen a certain way so that other things could happen a certain way.

Kathryn Soper [00:07:20] Just being behind all of this cause and effect. And it was a very comforting paradigm because anything that happened in my life, I could say, well, this is what God wanted and God knows this is best for me. And so I don't need to be afraid because, you know, God's in charge and he thought this was a good idea so I can have faith and relax.

Kathryn Soper [00:07:44] But that all kind of went out the window. When Thomas was born, I was. When he. When he was born, I still believed kind of the folk doctrine that God hand picks which of his spirit children will be born with disabilities and then and pick specific families for them to be born into.

Kathryn Soper [00:08:08] And that this is all orchestrated and arranged for the greater good of everyone involved. And that just did not jive with me anymore as I went through that first year with Thomas. That idea that I believe is very comforting in our culture because disability is a very difficult reality. And that philosophy is a way of coming to terms with a difficult reality and kind of framing it in a positive way and takes away a lot of the uneasiness and the unanswered questions and the ambiguity. And so we love.

Kathryn Soper [00:08:47] We love philosophies like that. We love folk doctrines like that, and we have a whole ton of them in the church. But I could not abide by it anymore. I came to know so many families that were extraordinary in many ways, but it was so clear that what was special about them was a result of their experiences and not a cause. In other words, these moms didn't have children with down syndrome sent to them because they're special.

Kathryn Soper [00:09:25] Many of them do seem quite special in many ways, but that is because they've opened themselves up to the experience that has come their way and allowed themselves to be changed in a positive manner by this difficult thing.

Kathryn Soper [00:09:41] I do not believe for one second that God is up there sending disabled babies to families that he's picked because they have some sort of special capacity to love a disabled child or to care for a disabled child. In fact, frankly, I find that idea offensive personally, although I don't get mad at people who believe it and I don't make a fuss about it. But to me, it's a very ignorant idea. Because of the hundreds of thousands and possibly millions of babies who have been born with disabilities into conditions that were anything but special.

Kathryn Soper [00:10:32] Born abandoned by families, institutionalized. The conditions that disabled individuals have lived in have been atrocious. And I think it's awful to claim that God arranged this baby to go to this family because this family is so special. For some reason, it just does not add up for me.

Kathryn Soper [00:11:03] The current abortion rate for fetuses of down syndrome is astronomical. It's estimated to be about 90%. And I can't. Whenever someone says to me, well, special babies come to special parents, I want to quote that statistic not in condemnation of the mothers who have chosen abortion. Because although I have plenty of strong feelings about that, that's not my point, but rather to say, are you really so confident that all of these parents who find out that they are pregnant with a baby with down syndrome, can you really be so confident that they are all been handpicked by God and that they are all special and somehow qualified beyond a typical human being for the job?

Kathryn Soper [00:11:55] I think it's just kind of a ludicrous idea, but I understand why people repeat it and why people believe it. And it's something that I believed myself until I had a personal experience which gave me reason to believe otherwise. So again, you know, strong feelings about it, but I understand why others have that perspective.

Heather Olson Beale [00:12:19] Yeah.

Kathryn Soper [00:12:20] Wow. As far as how that did you want me to. To relate that in a more general sense to, like, how my view of God changed? That God that was such a comforting and familiar God to me for so long just became a concept that just did not fit with my life experience anymore.

Kathryn Soper [00:12:52] And my idea of God has changed quite a bit. I believe firmly that God intervenes when absolutely necessary. I mean, the scriptures are full of stories of God intervening in people's lives. I believe that there are interventions that come for a number of reasons, and I've seen interventions in my own life. But generally speaking, I believe that God has prepared an environment for us to come and live in that does the teaching pretty much automatically. You don't need God to lightning bolt you with an experience to teach you about patience. Just go live your life and you will get all the lessons that you need about patience.

Kathryn Soper [00:13:45] And same with everything else. Loving people, having faith, forgiveness. I mean, anything important tenet that you could pick out. Life and relationships are the laboratories for learning those things. And it happens spontaneously. It happens organically. God does not need to set up a series of specific experiences for a specific individual in order for them to learn and grow in the ways that they need.

Kathryn Soper [00:14:17] I just think that there are so many paths to becoming who you want and need to be. And if you make a decision that sets your life in a certain direction. I'm not a fan of the whole idea that you can ruin your whole life with one choice. You know, they talk about the train track stories that, you know, if the train. There's a metaphor about train.

Heather Olson Beale [00:14:47] My husband hates that story.

Kathryn Soper [00:14:49] Yeah, I used to love that because I used to think, yes, there is one path foreordained and predetermined for me. And all I need to do is pray hard enough to figure out what choices to make that will keep me on that path and I will make it. And I just. I don't believe that at all anymore. I believe that there is a whole wide open realm of possibility and not that God is not aware or concerned or involved in our lives, but that he doesn't need to micromanage what happens to us on a personal level. There's. We will spontaneously learn what we need to learn just by virtue of being here for the most part. That's something that I gained. That's an insight that I gained from all these parents of kids with down syndrome.

Heather Olson Beale [00:15:44] Okay, interesting. That is. Well, I've had a hard time talking about that issue with my kids as my kids have gotten older. And my kids, they just ask me questions. And I just. Lots of times I just feel like I can't answer this, you know, but my oldest daughter came home probably about six months ago and said that they had had this lesson in young women about fasting.

Heather Olson Beale [00:16:05] And so she asked me something like, well, what do you think about that? Or I don't see you doing that. And I don't intentionally not do it, but lots of times I just forget. And so I just, again, in the spirit of honesty, I said, you know, I think it's a good idea. I said, but I've never had an experience, any kind of spiritual experience while I was fasting. And so I know other people do. I said, I just haven't. I don't know why, but I also don't think anymore, oh, it's because I needed to do it more. I needed to do it harder, differently or whatever.

Heather Olson Beale [00:16:33] I just was saying, I've never. I just haven't really had an experience with that. And then she said, well, remember that one time when Bapa, that's what they call my dad, remember that one time when he had that brain tumor? And I was sort of listening to her thinking, the brain tumor that he still has. Yes, I remember. Uh huh. And she said, well, and everybody fasted and then he went into the hospital and they did surgery and now he's okay.

Heather Olson Beale [00:16:54] Oh yes. And I said, well, I said well, he still has it. They took out what they could have it and they did radiation, they did chemotherapy, it's still kind of there. And then I was feeling kind of bad because we don't talk about it that much because it's just this is there, you know, so we don't, we just don't need to talk about it. But, but I was more worried about her saying, just in such a neat, tidy way. And remember we all fasted about it and she probably didn't. I mean she was little, but we talked about it. She knew that the adults were doing it on a particular Sunday or for many Sundays actually for her to just come to that conclusion.

Heather Olson Beale [00:17:27] And I said, well, honey, I just don't really know. I wouldn't probably say that. She said well, what do you mean? And I said, well, what about the people like that were maybe in the hospital room to the right of him and to the left of him and those people probably also had people praying for them and maybe fasting for them, we don't know. And they died, you know. I said, so what, what do you do about that? And then my kids sort of. Then I was feeling like a major buzz kill, you know, or testimony killer.

Kathryn Soper [00:17:54] Way to go, mom.

Heather Olson Beale [00:17:57] I said, well, I felt good doing it because all my family was doing it together. And I felt like we were kind of united. And so it felt like I brought us together, but I didn't think it was like, you know, Harry Potter, like we did that and then now he's better because then I was also thinking, well at, you know, the outcome could be unfortunate. And then what's she going to think? Like that we didn't do it right or we couldn't get God to make it be, you know, to give us the outcome that we wanted, you know. And then my middle daughter interrupted and said, well, but mom.

Heather Olson Beale [00:18:25] Well, I want to think that Heavenly Father helps us. And then I said, oh, I want to too. I said, I'm not trying to say that that doesn't ever happen, but it's just really a hard issue. I Said, well, did he help Bapa and not somebody else? You know, I don't know. It's hard.

Heather Olson Beale [00:18:40] So we talked about it a little bit, and afterwards I feel kind of bad. I thought, well, should I have said something different? Should I have? I don't know. I just. I didn't know. It was a very hard issue for me to try to explain to my kids something that I really maybe don't understand either.

Kathryn Soper [00:18:53] Yeah, I mean, that's. That's a tough issue for, I think, for so many of us. And my. I've had similar conversations with my children, and, you know, the best that I can offer them is that I have faith that good comes from prayer and fasting. How that good is manifest, we don't have any control over, and sometimes we don't even see it. I do believe that prayer works in the sense that it generates a positive influence. It brings more goodness into being as a result, and that's something that. That I can get behind 100%. But as far as what's the specific consequence of a prayer, that's a whole different. Whole different story.

Heather Olson Beale [00:19:44] Yeah, that's a hard. Well, it was a hard issue for me anyway. So you talk in the book also, I would say, about grief and about loss, but then it's sort of coupled with gain. And you talked about that a little bit with your Gifts book. Kind of. Those are maybe two sides of the same coin. But I wondered if you, like. If you could talk a little bit about what you. You talk in there about grieving, and you talked about, I think, feeling like you had lost something.

Kathryn Soper [00:20:16] Yes.

Heather Olson Beale [00:20:16] So what would you say? What were you grieving? Or what do you feel like you had lost? You were mourning the loss of what?

Kathryn Soper [00:20:23] Well, a number of things. The first and most obvious being that I was mourning the child that I expected to have, but that I didn't have. The son that was born was a different individual than the son that I was expecting. And so that's a really normal process for parents of kids with disabilities to go through, grieving the loss of the expected child.

Kathryn Soper [00:20:48] But beyond that, I was grieving the loss of a series of beliefs that had given me great comfort for a long period of time, that it had just kind of fallen apart. One being that if I am determined enough, I can rise to any occasion. I can make things work. I can be who I want and need to be as long as I exercise my free will until it's full, till its fullest. I will not be inadequate. I will not fail.

Kathryn Soper [00:21:29] I really believed that success hinged upon a person's degree of determination. And to see myself fall apart despite my own best intentions and efforts to not fall apart was really humbling. And I realized that there are circumstances in which you cannot triumph just because you want to.

Kathryn Soper [00:22:02] That as powerful as the human will is, you cannot will yourself through a difficult experience without experiencing pain. You can't use your willpower to change deep seated emotions that spring from difficult experiences. You can't use your will to change other people and their reactions.

Kathryn Soper [00:22:27] That was a sincere loss because it was a very secure idea to believe that I was in control and that if I just worked hard enough I could make things be the way I wanted them to be. It was difficult to let that go. It was difficult to let go of the illusion that I would always be available for my children and give them what they need.

Kathryn Soper [00:22:50] That was a pretty dramatic time in my life where I was not able to give my children what they wanted and needed at that time. I was struggling too much myself to be the resource for them that I expected myself to be. And that was also a very humbling experience and a sense of loss when I realized I can't be for my kids who I thought I could be for them. I can't be in effect, kind of their protector and almost their savior, you know, the person who is going to shield them from the difficulties of life, at least the kind beyond the usual day to day ups and downs.

Kathryn Soper [00:23:41] These were all kind of fundamental beliefs that I had that I didn't even know that I had until they fell apart. And I didn't know what was going to replace them. I didn't know what I was going to believe instead.

Kathryn Soper [00:23:57] And there is a great sense of emptiness and loss to see that certainty go away and not know what was. What was going to come next.

Heather Olson Beale [00:24:09] Okay, so you would say you. One of the things that you lost was a sense of certainty about other beliefs. Lots of things. Yeah, lots of things.

Kathryn Soper [00:24:20] Certainty and control.

Heather Olson Beale [00:24:22] Control, okay.

Kathryn Soper [00:24:25] Certainty and control. Yeah.

Heather Olson Beale [00:24:27] Okay.

Kathryn Soper [00:24:27] A lot of that went out the window.

Heather Olson Beale [00:24:29] And would you say. You said that you felt empty and you wondered what, what. How you would replace or kind of plug in those holes. And would you say now that you have. Or do you just live with that uncertainty or do you feel like there's something. It's turned into something different?

Kathryn Soper [00:24:46] That's a really good question. I think that I have begun to find different answers to these questions. I can't say that I have wrapped up all these tough issues and mastered them and got them in the bag or anything even close. But it's been more of a kind of surrender than it has been a rebuilding. It's been more of a letting go than a gathering and a holding.

Kathryn Soper [00:25:29] More of a sense of trusting, trusting God, trusting the way things have been set up in a general sense for this life instead of constantly railing against them. Trusting that conditions here will help us all get to where we want and need to go.

Kathryn Soper [00:25:54] Just some really basic changes as far as what's most important. What's the purpose of being here? What am I working hard for? What do I want most? Those things have all changed a great deal. And, yeah, I have a different focus, those areas than I used to.

Heather Olson Beale [00:26:20] That sounds like faith to me, what you're describing. Yeah, trust.

Kathryn Soper [00:26:26] Yeah, it is.

Heather Olson Beale [00:26:28] We have. I talked about this in the interview I did with John and a couple other people where in the Friend magazine a month or so ago. It had across the top of the page, we do not doubt.

Heather Olson Beale [00:26:40] And I was sad when I saw that. Although I know it's just. It's a kids magazine. But I kind of thought, well, that sort of demonizes the idea of doubt or being uncertain. But I think probably most people deal just in their daily lives with some degree of certainty and doubt. So I sort of hate to see us act like that doesn't happen because I think that's another one of those things that we don't like to talk about. If I say I'm not really sure about this thing that we, you know, this piece of Mormon theology or I don't know what I think about this, that could really cause you some problems in, like, your ward family or just in your own family for people to admit, for people to miss that.

Kathryn Soper [00:27:19] Yeah, it's like a taboo kind of thing.

Heather Olson Beale [00:27:21] But that's very real for me. That's one of those things where, you know, if I at church say, I don't know what I think about this, I find people flock to, like, say, oh, I've never heard anybody say that. And then I think, well, I can't be the only person to ever have thought this. But apparently, in your experience, I'm the only person who's ever been willing to, like, throw myself on my sword, you know, And I'm like, all I'm saying is I don't really know. That doesn't seem threatening, but. But somehow it is.

Kathryn Soper [00:27:47] Yeah, it is within a paradigm where certainty is an indicator of righteousness and success, you know, and you admit, oh, I don't have that. And it's like well, what's wrong with you then? Because, yeah, if you're doing everything you're supposed to do, you will have certainty. And that was similar to my experience with grief, where there's room for grief in Mormon culture, but only kind of within certain, certain bounds and certain conditions. And there's a lot expected of us to not fall apart during very, very difficult times. There's a huge emphasis put on fortitude, stoicism, kind of pioneer style, endurance, the idea that if you have sufficient faith, you will not experience excruciating emotional or spiritual pain.

Kathryn Soper [00:28:51] I felt that expectation really strongly, and that's why I was ashamed that I was having such a hard time, because I thought that that meant that I was somehow inferior. And I think that's really unfortunate. In fact, just this morning I was saying to a friend she was having a really difficult experience with in a relationship she's having, and she was talking about all this pain she was having and how stupid she felt for having the pain.

Mormonism, Women, and the Pressure to Cope

Kathryn Soper [00:29:22] And I think that is just a theme that I hear over and over and over in Mormon circles, particularly amongst Mormon women, which is, first, there's the layer of direct experience. Something painful happens, something difficult happens, and there are all sorts of things to deal with as a result, emotions to deal with, logistics and circumstances to deal with, hard things that you have to manage all of a sudden. And as if that layer weren't hard enough, so often we add an extra layer on top of that. It's kind of like our feelings about our feelings. It's like this meta level experience where we can't just be sad.

Kathryn Soper [00:30:12] We feel guilty that we're sad, or we feel sad that we're sad. We can't feel angry, just be angry, like, and have that just exist. There's always like a meta reaction to that emotion where we will question and sometimes reject and worry over how it is that we feel.

Kathryn Soper [00:30:37] And it makes things so much more complicated. If I could have just accepted my sorrow and disappointment and grief and anger and resentment about the difficult surprise of my son's diagnosis, if I could have let that be, I would have bounced back a whole lot sooner.

Kathryn Soper [00:31:03] But I was so ashamed that I was having those emotions that it became kind of a vortex, kind of a downward spiral where I would feel something negative and then I would feel. I would punish myself for feeling negative in the first place, because good Mormons don't feel that way and good moms don't feel that way, and that would just make everything worse.

Heather Olson Beale [00:31:26] So you would say then that your Mormonism played into that.

Kathryn Soper [00:31:32] Absolutely.

Heather Olson Beale [00:31:33] Or exacerbated it. Exacerbated the already hard feelings that you were dealing with.

Kathryn Soper [00:31:38] Yes, yes, absolutely. And I've got some flack for saying so. I've had some people vigorously deny that there's this sort of expectation rampant in Mormon culture about how we handle tough situations. And I thought it was really interesting because as this one particular individual, I have in mind, as she was repeating over and over to me, that Mormons don't judge that way and Mormons don't criticize each other that way and expect such things of each other. That's exactly what she was doing to me in that very conversation.

Heather Olson Beale [00:32:23] Right.

Kathryn Soper [00:32:25] And I tried to point that out, and that made her even more mad. But there's. There's very much kind of code of conduct.

Heather Olson Beale [00:32:34] Mm.

Kathryn Soper [00:32:35] That if you. And it can vary from. From place to place. I'm not saying it's the same for every member of the church across the world. I'm talking about my own environment, my own. My own sphere. And, yeah. If you're going to react and behave differently than. Than what's expected, that causes a lot of additional difficulty on top of the thing that's causing the struggle to begin with.

Heather Olson Beale [00:33:08] Yeah. And I think we do have sort of a particular focus on, well, like self reliance, you know, emergency preparedness. Like, pull yourself up by your bootstraps.

Kathryn Soper [00:33:19] Yeah.

Heather Olson Beale [00:33:19] You know, or if you're having a hard time, just pray harder and read your scriptures more, and then it'll either go away or you'll figure out how to deal with it. That, I guess, can be pretty unforgiving at times if we act on it or if we fail to act when we should.

Kathryn Soper [00:33:34] I do want to say that in terms of outreach, to me, after Thomas was born, my ward was extraordinary. And what I had. My neighbor across the street handed me the keys to her car and said, you know, take it. Use it anytime. To drive up to the hospital, we had people signed up for meals and help with rides and all kinds of things. And so there was not at all any sort of message to me that, you know, we don't want you to be struggling right now. It's bad that you're struggling. It didn't come from the people around me. It came from an expectation I had within myself that I think was absorbed over a greater period of time and was not the result of feeling like people around me were shaming me at all. I was ashamed of myself.

Heather Olson Beale [00:34:29] Okay.

Kathryn Soper [00:34:31] And that's. I thought I wanted to be better than that. I Wanted to be the person who could pick herself up by her bootstraps and be just fine.

Heather Olson Beale [00:34:42] Okay.

Kathryn Soper [00:34:43] Mm.

Heather Olson Beale [00:34:44] Well, so, yeah, I did want to ask you about that because you talk in there about people calling you, people coming over, you talk to. Well, I don't want to give too much away, but you talk about, I would say lots of people really being helpful, but about the fact that you at times were annoyed by their efforts. Is that a fair characterization or you wanted them to go away?

Kathryn Soper [00:35:08] Yeah. Oh, yeah. I had an intense desire for privacy.

Heather Olson Beale [00:35:14] Okay.

Kathryn Soper [00:35:16] During that time, which I think is. Is a pretty normal thing, you know, for at least people with certain personality types, where when you are. It's kind of like when you're in labor and you're in terrible pain, you curl up in a ball.

Heather Olson Beale [00:35:31] Yes.

Kathryn Soper [00:35:32] Because you're just trying to deal.

Heather Olson Beale [00:35:33] Right.

Kathryn Soper [00:35:34] With this. And you don't want visitors, you don't want to talk to people. You don't want anyone to see the hospital bed where, you know, you might have just lost bladder control. You know, you don't want to be on display when you are in agony.

Kathryn Soper [00:35:52] It's a very raw experience and you don't want spectators as well intentioned as they may be. So. So a complex situation there where I needed and wanted help. I mean, if everyone had ignored me, then I would. I would have been crushed. You know, I needed and appreciated knowing that people cared. But I think sometimes one of the most charitable things we can offer someone is a willingness to be there for them, but also a willingness to step back and give them the space they need according to their wishes.

Kathryn Soper [00:36:30] There's kind of the. The parenting technique of stay close enough so that your teenagers can push you away. That's what we do in our most safe, love filled relationships is there are people close enough to us that we can push away at times.

Kathryn Soper [00:36:51] And I'm really grateful for my friends and neighbors and Word members who stuck around and continue to express their concern and their support, even though I was being very antisocial. I think that that was incredibly Christlike behavior and it's exactly what I needed. And I hope that I can offer the same to others. Just ongoing support, but also respectful of space and privacy.

Thomas Today and the Family Bond He Created

Heather Olson Beale [00:37:25] Okay, Kathy, so talk to us maybe in broad strokes about how kind of looking back, not the things this experience is like over for you by any stretch of the imagination, but how you would say that it has been good for your family or how it's strengthened you and how it's been difficult. Maybe both of those things.

Kathryn Soper [00:37:44] Okay. Yeah. I love the question, first of all, because, you know, we've talked a lot about how there's always, like, these two contradicting truths that you're trying to find your way, trying to find your balance in between. Like, with your kids, praising them versus teaching them that what they do for praise is not what makes them a valuable person. There's a similar kind of dichotomy here where sometimes people feel like they need to either frame disability and down syndrome in particular, as a blessing or a hardship and. Or a tragedy. Okay? Like, it's either fundamentally really good or it's fundamentally really sad and bad.

Kathryn Soper [00:38:37] And the problem with this is that both are true. It's not either or. There are elements of Thomas's condition that have led to amazing blessings for me and for my family. Things that I would not trade for, you know, I would not give up.

Kathryn Soper [00:39:01] But it's important for people to remember that all of these things come at a price. You know, there's. For every valuable insight that you glean, you've. You've paid a price for that you've. Through your own experience. And it's important to not sweep that difficulty under the rug and pretend like it's not there and that it's just all rainbows and puppies at every house where there's a kid with down syndrome. That's just not fair. That's just not right.

Kathryn Soper [00:39:29] So again, back to our house just this morning. Ben was my son, Ben. He's 15 and a half. He was babysitting Thomas while I took two of my younger kids to swimming lessons. And when I got back, he was just. He was grinning from ear to ear because Thomas kissed him on the cheek, which is something that he doesn't spontaneously kiss us. You know, that's just not really his style. But apparently he was lying on my bed with Ben. They were playing with toys on my bed, and he just kind of crawled over to him and climbed up on his chest and kissed him on the cheek.

Kathryn Soper [00:40:07] And Ben was just. It was just the cutest, cutest thing. And the kids. All the kids just treasure their connections with Thomas. They all have kind of a soft spot in their hearts for him, and they all make efforts to interact with him and feel really gratified when he responds to them.

Kathryn Soper [00:40:34] It can be difficult because Thomas doesn't speak at all. He doesn't have any verbal capacity as far as words go. He doesn't. He's never said mama. He's never said anything. And so we can't talk to him. Not only does he not speak aloud? But he also doesn't have receptive language ability. So if you say, you know, Thomas, where's your nose? You know, point to your nose. He has no idea what. What you're saying.

Kathryn Soper [00:41:03] And so the. The typical means of communication in a family, you know, talking and listening aren't options for us, but that has actually enabled all of us, I think, to learn something that otherwise we couldn't have learned, which is the power of nonverbal communication and just how effectively you can connect with somebody and communicate with somebody wordlessly.

Kathryn Soper [00:41:36] And I see that's. That's really transformed my perspective, my perception in all of my relationships. And I know for my children as well, they. They really want him to talk. In fact, my son Andrew, who's 13, particularly, is anxious for. For Thomas to talk.

Kathryn Soper [00:41:56] And he'll ask me every few weeks or so, mom, when do you think Thomas is going to talk? Do you think he'll ever talk? I really want him to talk. I really want to be able to talk to him.

Kathryn Soper [00:42:06] You know, I want to be able to talk to him, and I totally understand that. I just, you know, I'd give anything to have him look at me and say, mommy. And I have dreams about him talking. I have kind of recurring dreams in which he's talking. And in the dream, I'm just elated, and I think, you know, it finally happened. It's finally true. And he's actually talking. And then I wake up, and I'm like, okay, that was just a dream.

Kathryn Soper [00:42:35] But despite that desire to talk to him and to listen to him, the bond is strong. The bond is strong for all of us.

Heather Olson Beale [00:42:51] So do you anticipate that he will be able to speak or not?

Kathryn Soper [00:42:58] You know, we really don't know. There's just no way of knowing. He's got a hearing disorder. On top of everything else, he has what's called a central auditory dysfunction, which you might remember reading about in the memoir. And we still don't know how that may be affecting his language development. All we know is that his brain waves in response to sound are abnormally shaped, and we don't know. The doctors theorize that it's possible that that distorts sound for him, that, you know, when he hears us talking, it's coming through in a staticy way or a garbled or just a way that makes perception of individual words very difficult, if not impossible. That's one theory, but we don't know, and we'll just have to see how things go.

Heather Olson Beale [00:43:57] Okay, so do You. You talked then about some things that. How it's good things that have come about in terms of your family relationships. Is there anything unique that you would say that has influenced. My gosh, I can't even talk. Your marriage.

Kathryn Soper [00:44:16] Yes. I think at the most basic level, having Thomas has created a bond between my husband and I that wasn't there previously, simply because we know that we're the only two adults on the planet who see him the way that we can see him.

Kathryn Soper [00:44:42] And that's, you know, that's true for all of our kids. I think that most married couples, part of what bonds them together is their mutual appreciation for their children in a way that adults who are not those children's parents can't have. You know, you and your husband are the only people on earth who love your kids the way you love your kids.

Kathryn Soper [00:45:04] But there's. There's something a little. Something extra regarding Thomas along those lines, I think, because when he was born that first year, there were so many. So many complex emotions, so many considerations that we had never faced before.

Kathryn Soper [00:45:25] And working through those together really opened. Really opened communication between the two of us on another level. We were both vulnerable and shaken in a way that we hadn't been before. And so that vulnerability, that mutual vulnerability can kind of make or break a relationship. You know, it can.

Kathryn Soper [00:45:53] The stress, the strain, the challenges can either draw you closer together eventually, you know, bit by bit, or they can really put a wedge between you. And we're lucky in that the two of us have had very similar feelings about. And responses to Thomas's diagnosis from the start.

Kathryn Soper [00:46:17] And so our. The overall experience has been really positive for us. It's not always that way. And I can imagine just how wrenching it would be if he and I were not on the same page about this child.

Kathryn Soper [00:46:37] I went to visit. I go and visit parents of newborn babies with down syndrome in our area from time to time. And I visited a family last month, and the mom was holding the baby. Just this gorgeous, gorgeous little baby that I was dying to hold, but I couldn't because she was medically vulnerable to germs. So I couldn't hold her. I was dying, too.

Kathryn Soper [00:47:04] And the mom was trying so hard to hold it together and to be strong for her kids and to accept her daughter the way she's come. But her husband, unfortunately, thought it would be best to give the baby up for adoption. He didn't think that their family was a good place for this baby to grow up.

Kathryn Soper [00:47:29] And this is not a condemnation of the husband, because I believe that in some circumstances, that could be the case. In some circumstances, a baby with down syndrome might be better off in another household. And there's actually a long waiting list of families that want to adopt a child with down syndrome.

Kathryn Soper [00:47:50] The problem in this situation isn't his perspective or her perspective, but just the difference between the two. And when you've got one spouse who's heading in one direction and one spouse heading in the other, you know, I walked away wondering how they were ever going to work this through. And no matter which way they went, no matter what decision they made, it was going to be a difficult kind of sticking point between them probably for a very long time.

Kathryn Soper [00:48:20] And so I think. I don't want to perpetuate scare tactics which are sometimes perpetuated by people who say, okay, you shouldn't have a baby with down syndrome. You know, you should have an abortion because this strain will ruin your marriage.

Kathryn Soper [00:48:39] And that's something that people take very seriously. And that is a message that's given to parents when there's a Down syndrome pregnancy. I don't think that that is a helpful bias to burden a couple with from the start. I think, as with everything, it's really important to acknowledge the possibilities on both ends of the spectrum that, yeah, this will likely cause stress in your family. It will cause some challenges.

Kathryn Soper [00:49:13] It could be very difficult in some ways. And it's important to acknowledge that those things are all true. But it's equally important to acknowledge the flip side, and no one seems to want to acknowledge both at once. There's kind of two camps, and the proponents are just constantly cheerleading what's so wonderful, and the opponents are constantly harping on how awful it is.

Kathryn Soper [00:49:44] And it just kind of drives me crazy because they're both, you know, they're both accurate. And the tug of war just doesn't do anybody any good.

Heather Olson Beale [00:49:54] Wow. So if someone, like, if you could give some advice, I guess if someone wanted to feel like they were doing the right thing or to be supportive of someone if they had a friend or a family member that had a child with down syndrome, what would you suggest that they do or not do?

Kathryn Soper [00:50:14] I think the most helpful thing that a person can do is to avoid making assumptions about how the parents are feeling. The most treasured interactions I had after Thomas was born happened with two friends of mine separately. And they both approached me in a similar way, in a way that acknowledged kind of the mixed bag of the situation. And that meant a tremendous amount to me. I had one friend call and say, you know, I heard about Thomas's diagnosis. You know, that's such a. That's such a big piece of news. And I've been wondering how you're feeling. And if you're feeling sad, I want to cry with you.

Kathryn Soper [00:50:59] And if you're feeling glad, I want to be happy with you. And I just don't know how you're feeling. So please tell me how. How is it? How are you feeling? And that was just amazing. That was the perfect, for me, the perfect approach, because the, the people who came to me with big smiles and hearts and balloons like, rah, rah, rah, you're so lucky. That really triggered my sadness and disappointment and anger about the situation. And conversely, the people who had real long faces and just shaking their heads and oh, what a shame, that really triggered my pride and my joy and my gratitude for having this child again.

Kathryn Soper [00:51:47] Both of those opposites are true at once. So if you're leaning too far to one side or the other, it kind of triggers the opposite reaction. And I believe that the most helpful approach is one that's focused on not what the parent should be feeling, but what they're actually feeling.

Heather Olson Beale [00:52:06] Okay, all right, good, that's. That's great advice. Alright, so let's have one more question, Kathy, because I guess this is Mormon stories, right? If you could talk about how this experience has changed in good ways or in bad ways, your testimony or your feelings about the church.

How Faith and Testimony Have Changed

Kathryn Soper [00:52:29] I would say that my testimony has, has changed tremendously over the past almost five years. The solid core of my testimony, my fundamental tenets of faith, especially regarding Jesus Christ, the atonement, have become even stronger, have deepened and have become even more important to me.

Kathryn Soper [00:53:06] The peripheral aspects of my testimony, kind of the things that you kind of add on top of the basic truths, a lot of those have changed very, very dramatically. There are things I used to believe that I no longer believe.

Kathryn Soper [00:53:23] You know, we've talked about some of those. There are times that I feel like I am kind of alone in a crowd at church because most of the people around me still subscribe to a certain worldview that's. That I don't have anymore. And it can be kind of lonely to be sitting there and having everyone talking about implantitudes and talking about these tidy equations that describe how things work in life. And you're sitting there just knowing that that's not how it's been for you. And you can raise your hand and share your experience, but it can still be hard sometimes to feel like you're the only One who sees it that way.

Kathryn Soper [00:54:06] You know, you long for validation. And so in that respect, my online friends have been a huge support to me. It's been an enormous boost to my level of church activity to be able to connect with people who otherwise I would not be able to talk to and connect with because of geography.

Kathryn Soper [00:54:30] So, like my participation on the blogs with Segala, by common consent, with individual relationships I have with people have all been a tremendous help to me and enabled me to kind of make it through the difficult transition period of feeling pretty alone.

Kathryn Soper [00:54:52] And these days, that's becoming less and less of an issue because I'm feeling more and more settled within myself and more and more confident about who I am and what I believe at this point in time. And I don't have the same kind of insecurity about being different. And that's made. That's a really positive change for me.

Kathryn Soper [00:55:21] My testimony of the Savior has really deepened and evolved, and likewise, my perception of my relationship with God the Father has. Has also changed quite a bit. I sense our interactions with each other differently than I used to, and I pray differently, and I hope for different things. And I don't know how to say it in a succinct way other than that.

Kathryn Soper [00:55:59] The whole experience as a whole completely shredded my testimony in a way, but also made it rock solid at the same time. It's like it got rid of a lot of extraneous material. It shook me so hard that anything that wasn't completely solid just fell off. You know, it couldn't withstand the stress of the situation, and the parts that remains are even more sturdy than before it all started.

Final Reflections and Closing Thoughts

Heather Olson Beale [00:56:31] Okay, do you have any other final thoughts, or. Oh, I wish I said this, or I should have said this,

Kathryn Soper [00:56:39] Maybe. Maybe. Probably the final thing that I would say is that the situation with Thomas has very much opened my eyes to the reality that we're all here to learn the same things, that we're all in the same boat. You know, the entire human family is in the same boat with the same struggles and challenges. And we have those challenges. They come in different packages. You know, they come. They come in different situations and circumstances, but all of us are here to learn how to love God, love ourselves, and love other people.

Kathryn Soper [00:57:29] And as I've talked about kind of rejecting the idea that God sent Thomas to me because I was a special mom who was uniquely qualified to love him, which. Which I can promise you is not the case, kind of the flip side of that is, especially in LDS culture, is, well, okay, if he didn't send Thomas to you because you were so well suited to be his mom, then maybe he sent Thomas to you because you needed so badly to learn what Thomas could teach you. You know, in other words, because you have struggled so much with the issue of disability, that's exactly why God gave you Thomas.

Kathryn Soper [00:58:16] And I can accept that to a certain extent. I can certainly acknowledge that I've been changed in so many fundamental and vital ways through my relationship with him, that I'm extremely grateful for and that I count it as a tremendous blessing. But I think it's a mistake to frame little babies with disability coming down to earth as well. They're going to the parents who need to learn about love, because every single parent does. I don't think that I'm any more suited to loving Thomas or any less suited to. To loving him than any other person walking the streets of South Jordan, Utah at this moment.

Kathryn Soper [00:59:09] You know, I'm not a standout in either direction. And I. I feel really strongly that we not categorize each other in these ways and think, oh, well, that happened to her because she needs to learn about this or that.

Kathryn Soper [00:59:29] Is there any one of us who doesn't need to learn the things that I'm learning through my relationship with Thomas? I mean, is there any one of us who would not benefit from that kind of experience, that kind of life changing experience?

Kathryn Soper [00:59:47] And all of us will have our own version of, you know, the unhappy surprise and the dashed expectations. All of us will be in situations where we have to confront our preconceived notions and our biases, you know, the whole point of life.

Kathryn Soper [01:00:05] It spontaneously brings us to stare ourselves in the face and confront what's ungodly and unhappy about ourselves. That's just how it works. That's how it's designed to work. And I just want people to. I guess I want everyone to not only look at Thomas as if he's a human being just like their kids, but I hope that others will look at me the same way and not see me as some sort of greater than or less than or in any way set apart from themselves.

Kathryn Soper [01:00:46] I'm not any different from you or anybody else. And we all have. We all have a deep need to have our hearts broken and transformed and sanctified. And all of us do. That's all I want to say.

Heather Olson Beale [01:01:02] Okay, I think we should end it on that because I feel like I'll ruin it if I say anything else. Okay, let's call it. All right.

Kathryn Soper [01:01:13] Thank you for joining us today on Mormon Stories. To comment on this episode or to provide feedback, please check us out@mormonstories.org if you want to help keep Mormon Stories alive, please consider either making a financial

Heather Olson Beale [01:01:25] contribution or spreading the word about this episode through your blog, Twitter account, Facebook

Kathryn Soper [01:01:31] page, Family newsletter, or through your Ward Bulletin and Ward newsletter. Just kidding about those last two.

Heather Olson Beale [01:01:37] Music on this episode was provided by

Kathryn Soper [01:01:39] Clayton and Sky Pixton. Check them out@clayton claytonpixton.com or skypixton.com that's

Heather Olson Beale [01:01:46] sky with an e s, k y e pixton.com thank you.

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