Ep. 96: “All We Want Is a Healthy Baby” | How This Feels to Parents of Unhealthy Babies

 

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Summary

We’ve probably all heard it before: When asked whether a parent is hoping their unborn baby is a boy or a girl, they reply sweetly, “all we want is a healthy baby.” To most people this seems like a valiant proclamation of unconditional love and indifference to the baby’s gender. But to parents of medically complex and admittedly very unhealthy babies, it can really pack a punch.

In this solo episode, Madeline unpacks what emotions this often brings up for parents, drawing from her own experience as well as the input from listeners as submitted via Instagram.

Episode Transcript

Madeline Cheney  0:00 

Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. And today I have a solo episode for you all about the phrase: "all I want is a healthy baby"-- that I think we've all heard tossed around before and has new meaning once we have various versions of unhealthy babies. I never dreamed that I would have a son with disabilities. My son's rare diagnosis has very little research. And I'm sure that is the case for many of you listening right now. And in that research, I had a list of different sub-diagnoses that go along with his genetic deletion. But in the literature, it did not include kind of a big one for us. And that has been vision loss. So when we did find out that he was partially blind on top of everything else, we were completely blindsided, no pun intended. It was really hard, in fact, I have a whole episode about that, episode 60. And in the ensuing couple of years since we received that diagnosis, you know, things have shifted, and I feel way more at peace and accepting of it. We've, you know, found a lot of support in the form of other parents and blind adults and Kimball reached a point where the ophthalmologists wanted him to be... to wear an eyepatch, she was hopeful that it would help his weaker eye gain a little more strength. And of course, I didn't want to do that I didn't want to take away the little vision he had by patching his stronger eye. But I also wanted to help my son and I was like, okay, well, let's try it. And so I grudgingly got online and was looking through different options for eye patches for him. And I stumbled upon See Worthy Patches-- which have the cutest patterns. And I was delighted to find that it was designed by a mom who wanted a comfortable and cute patch for her own child. So she designed these. And so I quickly ordered a box. And we've loved them, we've been so happy with them, they have several different options of boxes with their own themes. And I just love that I'm able to give Kimble a choice when we're doing something he does not love to to. He does not like to have his eyepatch. But to be able to offer him different cute options of patterns to choose from, makes it just like a little bit less hard for us and for him. And they stick just the right amount and they come off when they're supposed to. So, we've really loved them. So if you're a parent to a child who requires eye patching, I highly recommend See Worthy Patches, go check them out,. There's a link in the show notes for them. And I want to give a huge thank you to worthy brands for sponsoring this important episode. So back to the saying, "all we want is a healthy baby." I think we've all heard this before. But it takes new meaning when you are the one who has a child that is not healthy. And, you know, I think that it is obviously understandable. Like, of course people want a healthy baby. Like, no one wants to see their child struggle or suffer or have the chance of passing away. But you know, it can be like really touchy to hear that once you are on the other side of that. And you're like, Well, I had a baby that's not healthy. And I love that baby. And my first realization of that, oh, wow, this phrase really sucks when you're on this side of it actually happened like two days, maybe three days after, we found out that Kimble had, you know, medical complexities via ultrasound when he was I think it was about 20 weeks along. And of course we were reeling with this information. You can hear more about that in my preface episode. I'll link that in the show notes if you want to hear about that story. But like, you know, our world was flipped upside down. We didn't know if he'd live we weren't sure what he was going to have, syndrome wise and diagnosis wise.

 

And it just so happened that I was pregnant at the same time with my awesome sister in law, who I love and it was so fun because we announced our pregnancies at the same time. And you know, it was just so fun to kind of be following along. I think we were only like, one week apart gestation. And we actually ended up having our children one day apart. So, that was fun. But it also provided this contrast to our experience versus you know, a healthy babies experience. And so, we have a little group chat for that side of the family and they were about to have their anatomy scan as well. And so everyone was making their guesses on would it be a boy? Or would it be a girl? And my awesome brother-in-law made the statement and I'm not trying to bash on him at all. Like, it just was my first understanding of like, Ouch, that hurts. He got on there after their anatomy scan and as a joke because he's a jokester, he was like, it's a healthy baby. And it was... so it was really hurtful. And I don't think any less of them for saying that. It just, I think kind of illustrates like this this pain that can be associated with something that we don't really think about until we're in that position. We're often in you know, it's used as something like that, where it's like, do you want to be a boy or girl? Like, I don't care as long as it's healthy. And, you know, that's seen as like this like noble like, wow, she doesn't even care what gender it is, she'll be happy no matter what, as long as it's healthy. I think that's kind of the the bi, the owie  part of that right is like, oh, so are you saying you, you know, won't love that baby if they're not healthy? And I don't think people aren't necessarily saying that. But I think is worth acknowledging like, Yeah, that sucks to hear that, like, we don't like hearing it. And in preparation for this solo episode, I wanted to include you guys. I wanted to hear you know, various thoughts because like I, I've heard this before that it's painful for other parents do I know I'm not the only one. And I think it's a fascinating topic. So I opened it up on my Instagram stories. And if you don't follow me yet, check out the link in the show notes to follow me, so you can be included in fun things like this. I asked parents, "what are your thoughts and feelings when you hear all I want as a healthy baby?" And so I'm going to include their answers throughout the episode. But just to start, I included a few responses of how it feels when you hear this phrase. One mom said, "I get an immediate heaviness in the pit of my stomach." Another said "feels like a gut punch." Another one, "it made sense to me until it didn't, and now it just hurts to hear". And then lastly, "this saying always breaks my heart a little." So I guess all this to say like, I think for most of us it... it doesn't feel good, right like and I think there's a lot of like complex emotions that go along with it. And so I kind of structure this episode, around three main emotions that I feel personally and that I also, you know, it's all reflected in all these comments that I got from different people and different parents.

 

The first one being unfairness and envy, you know, on our behalf and our children's behalf, defensiveness over the value of our children in our lives. And then a sense of pride, which is something that has developed as time has gone on for me,  personally. So let's tackle the first emotion, which I think is usually the strongest, especially at first. And in the beginning, when you know, our emotions are the most tender and vulnerable. But that is unfairness and envy. Because there is this sense of, well, that's not fair. How do you escape this? It's not fair that you as a parent don't have to go through what I go through. And it's not fair that your child doesn't have to go through what my child is. And those are very valid. Because I think, you know, and things like this, you know, medical complexity and disability and just, you know, there's a lot of things in the world that aren't super fair, because I think the bottom line is that it's not fair. I just think that there's like such a strong feeling of that bitterness and that envy, like when just even just watching other children, you know, go through life and you know, like that. My niece that was born just a day after Kimble, like every-- and it's gotten way better since then, I don't feel this anymore. But like, every milestone she hit and every time I saw her and was like, she's so happy. She's never been to the hospital before she wasn't even born in the hospital. And look how good her life is and look at Kimble, like he's going through so much. He's in the hospital all the time, getting poked and prodded. And at that point, too I also had, you know, very short sighted views of what his life would be like and I didn't think there'd be a whole lot of joy there. Although I was proven wrong. But like that's where I was like, that's what I was thinking is like, that's not fair. That's not fair. Why can't his life be like that? And there's even, and I don't know I'm sure there are other people who feel this too, but like I also have felt that bitterness towards Wendy. And it's not intentional. In fact, it's very subconscious and sometimes I'll have to analyze how I'm feeling. And I'll realize like, Whoa, I think I feel kind of bitter towards Wendy that she, she's one of those healthy babies. Like she got off really easy and Kimble didn't and her her life has been very affected by Kimball's, you know, medical complexity. So, you know, in all reality, she hasn't been you know, unscathed by this. But, you know, there's, there's that, there's a kind of like, okay, well, you know, your life's a lot easier than Kimball's. And I have even found myself, giving Kimble more attention or being quicker to comfort him or more apt to give him accommodations and to try to make his life as easy as possible. I've done that more with him than I have with Wendy. And that's not fair to her. And I'm not proud of it. I'm trying to work on it. But like, I've had this realization that like I'm trying to make Kimball's life as easy as possible, because he's been through enough, right? Like these kids, they go through so much. And it just breaks your heart as a parent to see that and you want to protect them from that. But if you can't protect them from it, well, then let's see if we can make their life as easy as possible and as pleasant as possible. When we think about all that they have been through. And you know, this really, I knew this about myself, like I was like, I've been working on it. Because I don't think we do them a favor when we try to coddle them and we don't push them, you know, to a healthy amount that we should push all kids to, you know, learn and grow and become who they're going to be. And kind of reach their, you know, their potential. But it really became evident to me when I was talking to Kimball's preschool teacher, and we were working on these goals to help him you have more self help skills. And I was like, Oh, I mean, like, I just, I can't rember what exactly we're talking about, let's use the example of like, sometimes he wants me to carry him, he doesn't want to walk. And, you know, he has hypotonia. So that's at the back of my mind, like, oh, it's harder for him. And I was like, oh, I just, you know, I, I pick him up when he wants me to, like, I just, you know, I know, it's hard for him. And, you know, it's fine. I'll just carry him. And I was like, I just have a hard time pushing him. And she was like, yeah, that's actually pretty common, you know, like, when they've been through a lot to try to make their lives easier. And I was like, Yep, I tried to protect him. And, you know, I think recognizing that even right there, like can help us kind of scale back like to recognize that's not the best thing for them. And, you know, obviously, we want to fill their lives with joy and happiness and love, but coddling them and not pushing them is not necessarily doing them a favor. In fact, quite the opposite. You know, but it's tempting. I think it's something that I'll struggle with, maybe forever. I don't know, I can picture myself as, you know, mom to adult version of Kimball. I mean, like, oh, you need 20 bucks here, here's some money, you know. Because I think we do. We just, as parents, we want to protect them, and we want to compensate them for, you know, the hard things that they've been through. And, you know, a lot of you guys mentioned feeling this way, of feeling jealousy, when you see a baby that doesn't have any health issues, or, or doesn't have to go through what our children go through. And I think for those of us who are earlier in our journey, that might be the only feeling you have, when hearing this phrase of, you know, yeah, I wish that were my case. And it's not and I feel really bitter about that. You know, that might be right where it is, that might be the main response that you have. Or it might have evolved since then, and include some other emotions, like defensiveness.

 

And this is a huge one, I think, especially as you kind of surface from, you know, the main fog that we first have when our children are medically complex. But like, I think there is kind of this, this feeling of having your life judged by the phrase, "all we want is to help the baby" because as one of the audience members said on Instagram, hwere I collected answers she said, "it feels like they choose anything in the world, rather than my child in the life we have. It feels like they choose anything in the world rather than my child and the life we have." And then another person said, "it feels like people believe that my child is undesirable and a worst case scenario." Doesn't that get you? Like yes, it feels like that. It feels like our lives and our child's life. And our relationship with them is diminished into this like horror, like this nightmare that no one would want to be in. And it's, I think it's funny because it's like, well, moments are a little nightmare-ish. Like, like, I feel like I can like, I can see I'm like, Well, yeah, like, I'm the first to tell you that like watching your child, writhe and scream and pain, and you know, all of it, it sucks, like, it really does. And there's part of me that wouldn't wish this on my worst enemy. But at the same time, it's like, that's not all there is like, that's not my life. That's not all of it. There's so much joy, and there's so much love, and the fact that my child isn't just some object or abstract thing that's making me just suffer like, this is my child, this is a person that I love. And, you know, my relationship with him is so, so valued. And, you know, yeah, there's a lot of hard things that we've gone through together. And a lot of trauma that's happened. But like, I would hate to do life without him. And I think any parent would feel that way about their child. And so I think having our children, you know, diminished into like, this little sterile box of "unhealthy child." "Oh, that sounds hard. I would like to choose healthy child." Like, like seeing them as, as objects or products that we're looking for, for our perfect little lives. Like, I think that just feels really bad. And, you know, I think it's one thing to acknowledge, like, yes, we've been through really hard things. And yeah, I would make, I would take away Kimball's medical complexities if I could, to, you know, take away a lot of that suffering and struggle that he's been through, because like, I love him. So of course, I would take away the things that make his life hard. But at the same time, his life is worth living. And he does have a good life, and we have a good life. And you know, when other people on the outside that don't understand, you know, the depth of it all, they don't understand exactly what it is we're going through, they don't understand how we really feel about our children. They don't understand how it's actually very similar to how they feel about their healthy children. It is a feeling of being misunderstood. And being reduced to "well, I don't want that to happen to me." And I think it also is easy to personalize it. And you know, like the these listeners said, to say, well, then it means you don't want Kimble, that you would hate to have Kimball as a child. And that sucks. Because anyone in this world be so lucky to have Kimble as their child. And I'm sure many of you feel that about your own children. Like, we love our kids. And another version of you know, the "all we want as a healthy baby" is, you know, after the fact after that baby's born, or you know, any baby is born. And you know, in the caption of that, there's usually the phrase, mom and baby are healthy. Which, ouch. Because that wasn't a reality. And maybe a little bit that envy comes in, because look how perfect their lives are. But then also, and she's perfect in every way. I feel scorn. And when I see that, because I'm like, is that the value that we're putting on these kids?

 

Does their value change because their bodies are fully functioning or their non disabled? No. And I know that but I squirm because I'm like, Does this person know that? I think is just this value judgment of this baby is better because they're healthy, and that baby is not as desirable or as good. And of course, that brings up the mama bear and all of us have like, no, that does not have anything to do with their value. And I want to argue that I'm like, No, like she... okay, so her her systems are functioning in a way that Kimball's weren't and she's average height like Kimble isn't but like all these different things, do they equal perfection? And I don't know I still have like mixed feelings about this. I'm like, okay, like technically, if we're looking at like perfect as in fully functioning like, sure she's fully functioning and Kimball's body is not. But does that equal perfection in the way that we talk about perfection? And it's interesting too, because I just I've heard parents say, you know, like, she's perfect just the way she is. When talking about, you know, medically complex or disabled children I'm like, Okay, I like that, like I like, you know, his pride and like this, like aceptance. And like, I love my child just the way they are. But I'm like, okay, but like, also, you know, there are things about her body that are not, quote unquote, perfect, according to like health standards, you know, maybe she has seizures or, you know, whatever it is. And I think it comes down to how much do we value? Perfection. And I've, I've realized I don't value perfection, I think there are a lot more things in life that matter a lot more than that. The concept of having a quote unquote, perfect baby, or a healthy baby becomes a lot more complicated after you're a parent to one that's not, quote unquote, perfect. And it's very unhealthy. I think it makes you question things that you used to just take for granted like, man, you know, what is quality of life? And can my child be happy with these things? And things that we just thought were worst case scenarios. There were moments when I was pregnant with Kimble. And we knew about this diagnosis and, you know, the stuff we would go through and I wondered what his life would be like. I wondered what our relationship would be like. I wondered how I'd feel about him. And a lot of that comes from a very ableist society that we grow up in and ignorance. And of course, when he was born, I was like, well, this feels exactly like I felt when Wendy was born. I love him just as much. In fact, there's a depth to my love for him and our relationship that's, that's different. There is this depth to it. After going through so much that we've gone through with him and watching him go through so much. You're an extra level of protectiveness. And, you know, I think that that is something that a lot of us gain. As parents of these children with medical complexities and disabilities, we gain a different level of unconditional love. Or we realize that it was there the whole time. And we didn't realize it. Because I felt that. I felt that shift where I, you know, I went from that state of being like, oh, I don't know what's life going to be like? How am I going to feel about him? To wow, this is how I feel about him. And not just him, but like this whole community that I've been exposed to, because of him. So all of your children that I see on social media, and we talk about, you know, in episodes and disabled adults that I meet and see on social media because of this community that we're now part of. My eyes have been opened to this whole other aspect of the world that I didn't think twice about before Kimble was born. And I can see so much value and so much joy and humaneness in so many different ways of living, and different types of people.

 

And this newfound, unconditional love has become that much more apparent to me. And much more obvious to me. As I've gone through a fertility journey, I guess you could call it a saga and honestly, of like, okay, I found out I'm a carrier for Kimball's condition. So now what? And, you know, feeling this immense pressure from fertility specialists that we've seen, because I also suffer from recurrent miscarriage probably connected to the genetic condition. Where the IVF doctors, you know, push IVF and like, well, don't you want to prevent this? Don't you want to make it so next child doesn't have what your son has? Don't you want to prevent this? I think that's what gets me is I'm like, okay, like, I, I get like, there are so many aspects to this. And I'm not saying there's one answer for everyone. I, I don't think that's true. I don't think there's one answer for everyone. But I think like this, there's just this healthy baby obsession that is very evident in that world to where it's like, wouldn't you do anything to not have a child like Kimble? And I know, that's not what they mean. But I actually, I had to ask them, like, please don't push that anymore. It's offensive to me, because I had already come to my own conclusion that we weren't doing IVF and every time they said, don't you want to prevent this? I was hearing, don't you want to prevent Kimble? And, and I think it's, it's, you know, this whole predicament of being a carrier has made me take a long, hard look at our life with Kimble and to be like, would I do this again? Am I okay with the risk of having another child with these medical complexities and disabilities and I think that's a really tough question. And again, I'm not saying there's one answer for everyone, but for me personally, I've said, yeah, I think I am okay with that. And the feeling of that, of realizing like holy cow, like, look at how far I've come from how I felt when I was pregnant with Kimble. And I thought it was the worst thing in the world. Like, I really did. I thought my world was ending. And to come full circle from that and say, Yes, I'm okay with having another child with these things. I'm okay with going through it all again. And even as I say that, it's so so scary. Because yes, we know that these lives are worth living, and that they are misjudged from, you know, our society, and that everyone thinks is the worst thing ever, when there's so much value in there. But like, we also know better than anyone how hard it is, we do know that, like, I've been traumatized by these things that we've gone through together. And, you know, obviously, each of our journeys are so unique to one another's. And our lived experiences are different, and our personalities are different, and just life situations are different. And so, you know, I think there's a huge variance in how people react to this type of thing. And to illustrate that I have a quote from one of the listeners, when I asked the question about the healthy baby saying, and she said, "even though I love my son, I desperately wanted my daughter to be healthy and did everything I could to make sure she was." And I think that's another like another point in this is like, yes, there are many ways to show our love for our children. And that might be through IVF. And it might be by saying, I'll take whatever baby comes. And there are a million different ways that we show that and a million different ways that we can feel a newfound unconditional love for our children, for children like them, for people like them. And another way that I have, you know, really been able to see this newfound unconditional love. And this new breadth and depth of it is with my miscarriages too, right? Like it's a related thing. But it's, it is different. And I've been able to come to the point where I was examining how I feel about this about how many miscarriages I have.

 

Currently, I've been pregnant eight times, and had two living children. And, you know, suffering from so much loss, I've had a lot of time to think about it, like, hey, I'm pregnant again. And it'll probably put me through a lot of pain and grief as I lose it. And I've seen my unconditional love put to play, and how I feel about that and about these babies. And I've realized I honestly feel like I'll take them all. I'll take all the pregnancies, I'll take all of these little tiny babies. For us, however long that they are there with me. Even though I desperately want them to continue and I desperately want to have them as a child. I feel this openness to any and all life that comes to me whether that's Kimble or another child born like him, or stillborn baby, which is fairly likely, are these miscarried babies that are only with me for a couple of weeks. And, you know, this fierceness of of acceptance, like this fierce acceptance of all of these babies, and all of these pregnancies. It's been a powerful illustration of things that we can gain from, from these experiences with our kids. And I'm really, really grateful for that. That trait I now have that I didn't have before. I think if someone would have asked me Are you do you unconditionally love your kids? I'd be like, Yeah, of course I do. Just like any parent would say that. But I really feel like that's been widened. Like yes, it was there before but it's deepened since then. It's been, it's broader. Now it accepts way more than it used to accept. And, and my heart is recipient to so much more than it used to be. And I'm really grateful for that. I'm really, really grateful for that. That feeling of having such fierce unconditional love. And, you know, I think it's unique that I've been able to really examine this unconditional love because of you know, the fertility issues that we're having and that not every parent has this. In fact, it's pretty rare to have both the carrier status and the recurrent miscarriage. But I really do think that this trait has deepened in all of us where our unconditional love does broaden and deepen. And we're much more accepting of different people and different lifestyles and things that we would have dismissed as less than or worst case scenario. And I think there are a few traits that I would value more than unconditional love, like what matters more than that. So as fruit for thought, I mean, like, if this is something you haven't thought much about, ask yourself that. Do you think maybe you have a deeper sense of unconditional love and a bigger capacity for unconditional love than you had before? Do you think maybe you're developing that right now painfully, as you go through these things with your child? Do you think you might get there sometime? Someday? I'm going to throw that question out to the void. Because I don't know. I mean, like I, that's my theory. I think that we do develop that. So lastly, I want to touch on the feeling of pride. That, you know, I feel when people talk about, "all I want is a healthy baby." And I'm like, well, only a few of us are lucky enough to have a child that's not healthy and that is disabled, which it's not a huge part of how I feel. But it's definitely there. And I don't know, this is one where I didn't see anyone else saying this in the responses. But I'd be willing to bet there are some of you out there that feel this too: where, like this unconditional love, here are so many things in my life that are enrichened, and because of my experiences with Kimball, good and bad, easy and hard, all the things that I've experienced with him. And in this community, and so when I see that someone has a healthy baby, and especially if there's someone close to me, I feel kind of disappointed. Like, yes, there's a little bit of that like bitterness, like you know, he's been through so much. Why is your baby get off? So easy? And I've been through so much, why do you get off so easy? But also like, I'm sorry, not all of us are that lucky.

 

And I felt it like very strongly with people that I'm closer to because I think there's also this added feeling of like, but then we'd be in the same club, like, don't you want to be in my club? Because our community does feel kind of exclusive. Like, no one, no one gets it unless they've been there. You know, they can't get it fully. And, and I want, I want those I love in that club with me like, yes, the things we've gone through, I wouldn't wish on my worst enemy, because they were really, really hard. But at the same time, like but if you have to go through, like, hey, let's be in this, be in this club together. Let's relate on this thing that I've never been able to relate with you about. And so this became really evident to me. About a year ago, my younger sister became pregnant. And you know, we were really excited for her and stuff. And she was really happy. Then the anatomy scan was coming up. And everyone was like, oh, it's it boys a girl and I'm sitting there like, is it disabled? Is it non disabled? Because like, you know, anatomy scans mean something else once you've been through that. And it was on her mind too, because she's close to me. And she saw what happened at our anatomy scan. So I think that was on her radar more than you know, just the average person would have it on the radar. But she got back from her anatomy scan, like oh, you know, it's a boy and everyone's excited. And then she was like, and they don't know anything but like the doctor saw like a one sign that could mean Down syndrome. And everyone was like, Oh my gosh, holy cow. I'm so sorry. That sounds scary. Like, you know, asking, like, when are you gonna find out? And I was like, I feel really complex emotions about this. Like, I don't want her to have to go through things hard and scary. But at the same time, like Down syndrome that can be really fun. And thinking like, okay, like yeah, here are these accounts of people I follow that have kids with Down syndrome. I just love their kids so much. And, you know, I, I can just picture her life being like that. And I was like, Oh my gosh, we'd be in the disability community or we would be in that community of parents together. And I would help her through this. I would teach her that. I'd make sure she knows the words in the NICU. I would come up there and help her with it. I could talk her through all these emotions. She's going through it. I would refer her to all these solo episodes that I've done about it. You know, just going on and on of like, okay, here we go, I can help her with this. And we got on a call and I was talking to her about it, and I did help her through, you know, like, okay, like, you know, she don't know anything yet. And I'm just trying to come for and like, I'm here for you and stuff, if that is what it is, that was really getting used to this idea, like, Okay, I'm gonna help Sarah with this, this is gonna be great. And then they did the blood test, and it came back as negative. And so she was like, Oh, guess what, like our doctors said that the baby doesn't have Down syndrome, after all. And everyone on the group chat was like, oh, Ray, it's so amazing. I'm sitting there, like... because it kind of felt like a little bit of a gut punch towards Kimball and us, and I know, they weren't thinking that. But you know, it kind of felt that way a little bit. And I felt very strong emotions that were very negative. And I was like, What is this? Am I feeling disappointed that her child is not disabled? Am I feeling really sad right now about that? And I was like, yeah, I am. Let's dissect this a little bit. So I really like did some soul searching. And I realized, like, man, I was really excited for this. I was really excited to put all my experiences to use and to say, wow, this happened for a reason, because I can help my sister with this. And now we're in that same club. And suddenly that was gone. And she was back in the club of healthy babies. And I was like, huh, but also, are you sure there's nothing going on? Because Kimball didn't have Down Syndrome like they thought at first and your child could have a rare condition that they didn't test for? That suspicion was kind of always there until he was born completely healthy. And he's so cute, and I love him. But I just feel like this is such an interesting situation to be in where like, again, that was a huge contrast to how I felt when Kimble was diagnosed prenatally before he was born. And how I thought it was the worst thing ever. And then to be in another position of that with my sister to be like, Oh, this is awesome. And think of all the cool things you're gonna go through, and all the cool things that, you know, will happen. And all the attributes that you'll gain because of this, and the different worldview you'll have, because of this, and all the people, you'll meet because of this, and, you know, genuinely feeling excited about the idea of her having a child with, with Down syndrome with disabilities.

 

And, you know, I think, like I mentioned before, like, not everyone's at that point, and I don't, I don't think there's anything wrong with not being at that point where like, oh, I wouldn't be excited if my, you know, sibling, thought their child might have medical complexities or disabilities. There's nothing wrong with being in the position of like, I'm not there. But I think the point of that is also that these emotions evolve, and they can evolve, and they will, as our experience with our children evolves. And, you know, I think that's good. And it's okay, and it's part of all of this. And there's also like, the unexpected emotion that I've had to have like, wait, if we have a healthy baby, how do you do that again? And wait, so like, no therapies? And also, we just take the baby home? And so what about when the baby's napping? Do we have to be quiet? If they're, if they can hear like, we don't, we don't have hearing aids, we can just pop out just these different things of like, okay, like, yes, a healthy baby would be easier, but some, in some ways. Oh, that sounds kind of hard. Like, do I remember how to be a mom to a healthy baby. And, you know, I think there's that aspect too, especially for people who have only ever had a disabled child, but they've never had a non disabled baby and they don't know what they're supposed to do, they have no idea what they're doing with that. Which is another whole thing. And in conclusion, I just hope that from this episode, that wherever you are in this journey, wherever you are in your evolution that you do feel seen and you know that there are people that feel similarly to you. And that you know, we're kind of we're in this together. Like, yeah, if you cringe when you hear the phrase "all I want is a healthy baby", you're not the only one. I feel it too. We all feel it too. And you know those feelings can evolve and I just hope that as you feel seen, you feel a sense of this community with you and behind you and that you know, that you're not alone.

 

You can find links in the show notes for the episodes I mentioned in the episode as well asSee Worthy patches if you want to check those out. Join us next week for Melissa has story. Melissa has a nine year old who has disabilities and medical complexities, and she shares what it was like to receive his initial diagnoses and how her feelings about it all have evolved so much since he was born. Melissa is awesome and you will love this episode. Don't miss it. See you then.

 

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Ep. 101: Tiffany’s Story | T18 + Advocating for Her Daughter’s Right to Live tiffany's story https://d3ctxlq1ktw2nl.cloudfront.net/staging/2022-8-29/288341331-22050-1-21a6efcfbe742.m4a

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68: Dipping My Toes into Educational Advocacy

 

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