Ep. 77: To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way.”




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I am definitely one of them. Hearing other parents of children with disabilities say adages like this one has always made me squirm inside because it’s simply untrue to me. I would have Kimball another way—free from pain and suffering. But I’ve realized a trend—the parents saying this phrase were almost always parents to children with disabilities that do not cause pain or suffering in and of themselves. And are certainly not life-shortening.

In this solo episode, I divide out disabilities and medical issues into those two categories—ones that cause suffering and the ones that do not. And I suggest that we accept that we will probably always hate those in the first category (because what parent loves something that causes their child pain) and move towards acceptance and love for those disabilities in the latter group.

I also acknowledge than the sadness or pain we have over any of these disabilities or medical issues always stems from the love we have for our children.

Episode Transcript

I think so many times we feel silenced, to these really negative emotions and like articulating them and sharing them lest others misunderstand and think that those negative emotions are directed at our children themselves.


Hey, you're listening to the Rare life. I'm your host, Madeline Cheney. And today I have for you the very first solo episode of season five.


So I realized that this episode is releasing on I think it's technically Christmas Adams, so the day before Christmas Eve. So to those of you who celebrate Christmas, Merry Christmas, I hope it is a wonderful one.


Okay, so this is definitely a solo episode, that I would mark as deep dark part of my heart that needs to be vocalized. And it always feels a little bit scary to share these things. But I've gained confidence, you know, over the past year and a half of podcasting, because many times these types of episodes resonate with you guys. And I always hear from people that say, "wow, I've never heard anyone else say that. But I feel just that way" or "thank you for articulating something I was too ashamed to say out loud." And so I guess I'm just acknowledging that I am coming out of my comfort zone to speak to maybe some controversial topics in order to shed some light on things that maybe you've felt to before. Or maybe you know, you haven't and you can just have another perspective, I guess. So today, I do want to speak to a phrase that I've heard many parents say, and from the very first time I heard it, it kind of sat odd with me, I had a hard time with it. Not in the other parent saying it but in like, okay, like, how do I feel about that? I don't think I feel that way. And it is this. And actually, there's a specific time. Remember, the first time I really heard this, and it was when I was first getting involved in social media as far as like within like this community. And I think Kimball was like, I don't know, a year old or something. Or maybe you're in half. And a friend of mine whose daughter has a different form of dwarfism, that doesn't have nearly as many like medical complexities with it. She was talking about her daughter and she was like, it's so awesome. I'm so glad she has dwarfism. I wouldn't change a thing about her. And I'm just so happy that she has this. And when I read that I was like, okay, that's like super cool that she feels that way I can like feel of this mom's love for her daughter. And that's so cool. But I had the kind of like that, I don't know, oh, well, that's easy for you to say. But that's not how I feel. And I felt the need I did, I made I made a little post, almost like speaking to that and being like, you know, I know, some parents feel that way. But I don't feel that way about Kimble and especially then because his diagnosis has caused him to suffer a lot and to be in a lot of pain or, you know, you just anguish and suffering. And so, you know, as as mom of someone who loves him, I was like, I just don't think I can say that. And so I think that's when I really first like realized that I felt that way. And so ever since then, I've noticed a lot of parents saying things to that effect, that basically that the diagnosis that their child has is awesome, and they love it and they wouldn't change anything. And I've noticed that there is something consistent about most of the time, I won't say every time but most parents when they say that is referring to diagnoses or disabilities that are not necessarily causing their child pain, or shortening their life expectancy, or, you know, really causing them a lot of anguish.


And so for the purpose of this episode and trying to explain kind of these like complicated thought process or like emotions, it's like I feel like you can kind of divide up various disabilities into two different groups and I will fully acknowledge this is not black and white, it's very gray. Each person listening probably has their own you know, different definition of what this would be. But for me at this point, I feel like there are kind of two different groups of disabilities and I will refer to these as Group A and Group B throughout the episode so pay attention.


Okay, so I would consider Group A or type A ofdisabilities to be disabilities that require accessibility. And just make the person may be different from the typical person you'd see walking around the, you know, on the street. And so this might be someone who is deaf, or a wheelchair user or someone with a limb difference, things like that. So things that are not, I'm not gonna say they're easy or try to minimize, you know, the different struggles that might come along with those things. But those are typically the disabilities that I see disabled adults, but having a lot of pride over their disabilities saying, No, this is awesome, I love this, I love that I'm deaf, or isn't my wheelchair awesome? Like, it helps me get around. And the problem isn't me it's accessibility, they need to have ramps like things like that, which I totally agree with.


And then the second camp that I kind of, I don't know, like, I guess the other side of this is, you know, Group B. And that would be disabilities that cause limits to the lifespan, they may be life limiting or life shortening, maybe pain giving. So things maybe like epilepsy, or airway struggles, or things that our children visibly just hate you I divide these up into two different groups. But I feel like most of us with our children's diagnoses encompass a few of each, like a probably not just in one camp. And Kimble is definitely one of those because, you know, he has several disabilities in type A and type B. And I would say that, like, if it's something that he is really sad about, or he hates, or and not, because society tells him to write he's very young, at this point. None of it is ableism. He's being taught, it's just purely like he just doesn't like it. And that's an understatement. or things that threaten his life that could kill him. Like, those are things I'm like, Okay, this is definitely in Group B, and the group B, those aspects of his diagnosis are totally the things I'm like, Yes, 100%, I would take this away from you, if I could, like, I'm not gonna sit here and be like, I wouldn't change anything about him about those things. One example of that would be his feeding tube, which he has graduated from. But he initially had an OG feeding tube. And I'm sorry, to those of you who already know this, but he initially had an OG feeding tube through his mouth. And he hated he hated that thing. He would pull it out all the time, and we had to put it back in and he would just be writhing and screaming. And, you know, those are some pretty pre traumatic memories of like having to shove that thing down his throat and hold him down. That I think 100% goes into that group B a disability that like, I just hated that. And he hated that. But then we gave him the surgery to have a G tube placed where instead of going through his mouth, down the back of his throat into his stomach, they placed it would go directly into his stomach. And after he recovered from surgery, which was not fun for him, or us, that was such a great thing. And I think I you know, I still would be like, Oh my gosh, people are looking at me while I'm doing his feet or whatever. Like that was a separate thing. But on his end, it was great. And even like when he graduated from his g tube, and he started taking milk by mouth, and we were so excited. It made life a lot easier that way. We left his g tube button, which is the part that the tube would connect to. So it was like kind of sticking out for those of you who don't know what that looks like. But we left that in his stomach. I think it was like a year and a half. Like, just for emergencies. I just could not trust that we wouldn't need it for something like hospitalization or something. His gi doctors, they're like, No, you need to take that out. Like he doesn't need it anymore. And so finally, we were like, Okay, it's time we had ice cream all ready to go like we were gonna celebrate like yes, like this is a great milestone. He doesn't need this anymore. It's so cool. And he removed it. And Kimball was so upset. And I think that just goes to show like these kids like they don't know any different like they don't expect their lives to be any certain way like I think to him It felt like we had just removed a body part of his because he was so used to having it from when he was three months old. And he used to kind of play with and fiddle with it with his hand whenever he was like nervous. And we had taken that away and it felt strange to him to not have that anymore and he was really sad for weeks after that. He kept asking me to put it back in.


So I think that is a really good example of something that did switch over into the group A, like he was fine with it, he was at least neutral about it, and then he grew to love it. But before that, when it was going in his mouth down his throat, he hated that thing. And it felt like I was torturing him. So that definitely wasn't the group B. I even think there are things like that is feeding tube experience where you could even kind of straddle the line and maybe jump back and forth between the type A and that type B. So, you know, I feel like it's important to differentiate between the two groups of types of disabilities. And, you know, again, you might have a different way of differentiating, but just to be like, you know, what, if I am sitting here, hearing someone else, say, Oh, I wouldn't change anything about my child. I'm like, Ooh, that feels kind of yucky to me, because like, I totally would take away his epilepsy or I would totally, you know, take away her brain tumor, or like, whatever. I guess I'm just here to like, kind of state the obvious, but to say like, that's okay, in fact, that as a very natural response as a parent to not want to watch your child suffer, and to be sad that they're going through these things, and to want to take that away from them. And then going back to the Type A disabilities, I do think that, you know, it is the end goal for us to come to terms with those things, and to accept the fact that a lot of times the things that make those things hard for us, so the things like deafness, or meeting a wheelchair, or having limb differences, etc. A lot of the things that make us sad about that or upset is kind of a lack of understanding of what it might be like for them to have those things. And you know, there are a lot of I think deafness is a really good example of that, because there is definitely a a mentality of like, I think most deaf adults that I've met, say, like I love being deaf, I think deafness is awesome, and I love my community. And the problem and the struggles that I've had with it is really, you know, culture or society that tried to fix me or change me or, you know, my parents never learned how to communicate with me, or I felt ashamed of it, because people made fun of me, like, it's really a societal issue, and ableism and prejudice against people with disabilities and assuming that they're less than because of these disabilities.


And so I think it really is the end goal for us to find true acceptance and like happiness really, as being their parents, is to really accept that these you know, these type A disabilities aren't inherently sad, I'm not going to minimize that they might add extra struggle, because society is not built for these different disabilities. And, you know, it probably does add extra hassle or whatever, but that we can recognize that a lot of adults living with these different disabilities are actually very happy to have a great quality of life.


And I would say that I have definitely started on that journey. I haven't completely come to terms with that. And one example is Kimball's deafness, when, you know many of you have heard that episode or, you know, have heard me talk about how we were just so devastated to find out that he was hard of hearing. And I do think that that was it's a complicated reaction, because it also came from a place of like, when we're trying to keep this kid alive, he has all these type B disabilities. And I was really overwhelmed. And so to add on, something else that we would need to help him with was really, really overwhelming. That's an understatement. But I do think that there was also the side of me, that was like, "Oh, he's not going to be as happy now. And his life won't be as good as it could have been if he could hear, " which I don't think is necessarily true. And I do think that a great way to the I have come to terms with this, and I've learned a lot is listening to the disabled community speaking to this. And I wish that the disabled community were able to be more diverse in who speaks out because, you know, I think a lot of our kids, you know, have disabilities that also cause them to be nonverbal or otherwise not really able to communicate the same way that you know, other adults are able to, and so we're not hearing all the stories and the full picture, but I think seeing these disabled adults, proud of their disabilities and happy in their lives, and doing these awesome things, and just being human, I think has been very good for me and I think it can be very, very healthy for all of us to really see that as parents and to be like, you know what, like, they can totally thrive with these things. Like just because they're Different than we are doesn't mean that their life will be less, you know, fulfilling or happy. But again, they're still like the type B disabilities that that can be just hard and just sad to see our children go through and to live with. So yes, I feel like it is a very it's a great goal to work towards to, you know, really accept those type A disabilities and to just be so you know, supportive and even proud like I can honestly say now I'm like, I love that Kimball is hard of hearing, I think it's really cool. And I love this community we're part of and, but I think that we absolutely do not need to love those type B disabilities, we don't have to. And in fact, I think it'd be unfair, to try to force yourself or to feel like you need to or you're ablest, like, if you visualize a child that maybe couldn't tolerate their feeds, because of some underlying medical issue or whatever, and they're vomiting constantly. I mean, like, if you picture a parent standing over that child and smiling and say, you know, I just wouldn't change a thing. And I love this about my child. And this is so cool. Like, that would be completely unnatural. And it'd be so off, because we love our kids. So seeing any kind of suffering like that is really hard. And we don't like that kind of stuff. I know, it sounds like I'm stating the obvious, but like, it just sucks. And I think it does not show a lack of love for our children, when we say I hate their epilepsy, or you know, whatever it may be, I hate that they have this because it absolutely reflects our love for them. It's mama bear coming out. It's seeing our children being threatened by something real and scary and wanting it to go back to hell, where it came from. And yet, I think so many times we feel I have felt silenced to these really negative emotions and like articulating them and sharing them lest others misunderstand and think that those negative emotions are directed at our children themselves, or in some way saying that we're not accepting or unconditionally loving them. And that is absolutely not the case. Right? Like, as any parent really does, no, no, it is our love for them, that causes us to hate these symptoms that cause them this misery, or these medical issues, or their eventual death.


And I think that's something that is probably the hardest part of having a child with these type B disabilities, or even the Type A disabilities when you perceive them as sad or bad or whatever. And that is watching our children struggle and suffer and not being able to really do much about it, and not being able to cure it or make it go away or stop tormenting our children. Especially when we have this insanely strong instinct to protect our children and to make them as happy and comfortable as possible. And then to not only not be able to prevent these hard things, but even sometimes to have to perpetuate them for their own good. And you know, that could be holding down your child while they're screaming and getting get another blood draw or another shot of growth hormone, or a great example of that, for me is when Kimble would have these surgeries to try to open up his nasal airway, which is a really rare birth defect the way that his nose was formed. And so they were really struggling to try to figure out what to do to help him to be able to breathe and so he'd stopped being hospitalized every time he got a cold and had several these surgeries but on our last try, we were to put these plastic stents up his nose into his nostrils to try to hold it open so it might heal more open. And we were not guaranteed any results. We were not told this but for sure work. I had never really been tested. But we gave it a shot to try to improve his quality of life to help him breathe. And it was horrendous. I mean, I have worked through this with my therapist just to say like how horrible this was, but like we had to hold him down while he was riding and screaming and shove these plastic stents that were an inch long. Okay, in his tiny little nose a little baby were tubes and shove them in there until he would sometimes be bleeding out of his nose because of the way it was shaped and how tight it was in there. And he would just be beside himself and I was torturing him. I was torturing him. Oh, but it was to help him. I I was doing what I thought might help him breathe. And you know what the surgeon was telling me to do. And we would tape it to his face. And he was like this like special glue to try to keep it there because he got really good at taking them out. And, and I would hear him just labor even harder trying to breathe because it would obstruct his airway a bit. But it was like with the hope that in the end, it would help open up that airway and help him in the long run. And so I know that there are a lot of you listening that have had similar experiences like this, where you're inflicting more pain or holding them down, while these scary things are happening to them, to try to help them. But you know, a lot of times they don't know that you're trying to help them. And it goes against everything inside of you to do this to them. But, you know, we do it, because we love them. And that's got to be the worst part of, of those type B disabilities is not being able to take this away from them, and not being able to really fix it for them, and to rescue them from it. And to even have to perpetuate some of the suffering. I just I can't say it enough times that all of these negative emotions that we have towards either group of disabilities, whether it's the type A or type B, it all comes from the love that we have for our kids. And the defensiveness, we have our protectiveness wanting to protect them from suffering. And I think acknowledging that is really important. Because if you feel shameful about a thought you have an emotion you have or you feel like oh, okay, maybe that was a little ablest for me to have thought that you can still go back to and be like, Okay, well, like I'm learning, and I'm evolving. For the thing that has always been here the whole time is my love for them.


And maybe the way I was raised or society has taught me that being different or looking different than other people is bad and sad. And so I assumed it was bad and sad. And I was sad about that, because I love my child. And then I started listening to the disabled community more and rather than, like, Hey, you know, this physical difference that just makes them look different, is not bad or sad, it's great. And you know, or at least I could feel neutral about and be like, Hey, this is part of diversity. And this is part of what makes the world beautiful. But then to not shame yourself for thinking or feeling negatively about it in the first place, because it always started with love. So while we do not need to, and probably never love these type B disabilities, we can absolutely love our child and the ways that those disabilities have probably affected them. I often look at Kimball and think, okay, there's no way to know for sure, but I'm like I'm pretty sure that these really hard things he's been through. I don't know, I'm sure they've affected his little personality in some way. And I love Kimball I love everything about his little personality and about him. And so in that way I can be like, you know what, I wish I could have taken those things away from him. But I do love who my child has become. And in part because of those huge struggles. And even like looking at Wendy, you know, she's struggled as kind of a bystander of these things. And to look at her and be like, you know what, she knows what a trake is. She knows a lot about the world. And she has developed her own little personality that I'm sure has been influenced by these things, and witnessing these really hard things that her brother has gone through. And And what about what's happened inside of me, what of the brokenness and the trauma, and the growth and the tenderness and the empathy, and the community and the shift of worldview. All of these things that I've experienced because of really, really hard things of shoving those no stents up into my son while he's riding and screaming or putting that feeding tube down his throat. These things I would never say, Okay, yeah, give that to my child so I can grow, right? I would never wish that. But I can still look back and be like, but I can still be grateful. And I can still be like, yeah, I'm proud of this part of me that I've developed because of that. And also like yeah, like a house and trauma I need to work through with my therapist, right? So if we could recognize the good that's come from it, we can also acknowledge like, Hey, I'm a little messed up now. And I'm gonna go work through that gate therapy. And so I think you know, that is definitely something that we can love about those type B disability.


And then with my son's type A disabilities like his dwarfism and his deafness, I can honestly say that I've come to the point now where I'm like, that's just a part of him just like his blond, beautiful long hair, and I wouldn't ask to take that away. I love that about him. And I know that there will be societal struggles with that, you know, different people who judge him because of those things, or, you know, struggles, but I still think those are beautiful parts of him that I do love. And I am still working on the blindness. That one's a hard one for me because he complains about it. So it kind of feels like it shoves it down to the type B disabilities just because when we put his eyepatch on, and so he only has access to the eye that he's has very low vision on he cries and says it's too dark and wants me to remove the eyepatch. So again, this is an example like, I think that there are disabilities that, you know, they can kind of evolve and shift between the two groups, it's not this black and white structured thing. So I guess I have a little call to action for you, I invite you to kind of consider what aspects of your child's diagnosis might fall under a type a disability and a Type B disability. And maybe consider ways that you can move towards more acceptance and, and love of those type eight disabilities, while also holding a lot of space for anger, sadness, resentment you might hold for those disabilities in the Type B category and knowing that that's okay. It's totally okay. It's expected. It's hard, it's hard to watch them suffer. And while you're doing all this, considering and musing about these things, always remember to hold that self compassion and to trust, the journey that you're on and to know that you will evolve we are all continually evolving and adjusting and figuring things out. And in conclusion, I would just say that, I think what our children teach us from day one is that, that having a good life does not need to be void of pain and suffering are disabilities that there are many things that they find joy in, and fulfillment and satisfaction in along with all that, you know, the hard things and the struggles. And I think that is a really awesome lesson for us to learn from them that no disability determines someone's quality of life that they can still have wonderful, beautiful lives. And isn't that a wonderful thing? You know, we love our kids so much. And even if they do have tons of these type B disabilities, isn't it wonderful that they still can have an awesome life and a life full of love and being loved and, and of knowing of their worth? And I think that really can be the most consoling aspect of those type B disabilities and of all disabilities is that our kids lives are not sad. They may have sad aspects to them. But we will continually show of our children's worth and the worth of their bodies, the worth of their souls and the worth of their lives. Join me next week for Wendy's story. No, not my daughter when she will not be on the show. At least not yet. Wendy is mom to teenage Amman who has a rare syndrome and is on the autism spectrum. Wendy is so great and you will love her. Don't miss it. See you then.

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68: Dipping My Toes into Educational Advocacy