Ep. 98: Siblings | Ways We Can Protect Our Glass Children w/ Melissa Schlemmer




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Siblings of disabled children are often referred to as “glass children.” Glass because people tend to look right through them and focus on the sibling with disabilities. And because they appear a lot stronger than they are. Because they are, afterall, just kids.

In this special topic episode, Melissa Schlemmer shares all about her incredible son Alexander and his big heart. She talks about ways she protects his relationship with his disabled brother Christopher by not accentuating their differences and allowing them to simply be brothers. She also tells us of a tragedy that occurred in her mother’s family that has shaped the way she parents them.

Episode Transcript

Melissa Schlemmer’s  0:00  
Our kids with medical complexities come with a lot more, a lot more responsibilities, and his brothers don't need to hold any of that.

Madeline Cheney  0:11  
Hello, you're listening to The Rare Life. I'm your host, Madeline Cheney. And I'm so happy you're joining us today for Melissa Schlemmer's special topic episode, all about siblings. As we really examine and explore in this season of the podcast, so many of our relationships are greatly impacted by having a child with disabilities and medical complexities. And of course, our relationships with our non disabled children is no exception. And it's something that's so close to home that totally impacts our lives every single day. So you may or may not know that siblings of people with disabilities are sometimes referred to as glass children-- glass, because people tend to see right through them, and focus on the sibling with disabilities. And because they appear stronger than they really are. Because after all, they're just kids. Doesn't that just get you? My gosh.

We've done episodes about siblings before we did one with a child life specialist, with an adult who grew up with a disabled brother, and I did a solo episode about what things were like with my non disabled daughter, Wendy, which you can find links for each of those in the show notes. But this is our first conversation with another parent about the ins and outs of siblings. And honestly, Melissa and my experiences couldn't really be more different. As you probably remember from her story episode, the one released just before this one, go check it out if you haven't yet for context, Melissa has an 11 year old son Alexander, and a four year old Theodore, but we mostly focus on Alexander since he's old enough to kind of understand what's going on. Alexander has been incredibly loving and accepting towards his disabled brother Christopher, who is nine. In this episode, she talks about Alexander and his relationship with Christopher. She also talks about efforts that she has made to help Alexander feel important and loved, even though Christopher does require more time and attention because of his medical needs and disabilities. And I know it's like super common in our community to want to teach our non non-disabled children all about their siblings, medical equipment, and cares and just all things disability. But Melissa does things a bit differently. And I thought this is super interesting. She wants her children to see Christopher as simply their brother. And in fact, she does her best not to call attention to his differences. And in this episode, she tells us of a tragedy that occurred in her mother's family that has really shaped the way that she does parent her children. On that note, I want to point out that these episodes are never here to tell you one right way to do things. They are here for solidarity and for you to pick up a few tips if you, if they resonate. We all have our own unique lived experiences past and current and unique situations. And, you know, we just need to do things that we feel is best for our family and for ourselves. That being said, I do encourage you to listen with an open heart to Melissa's perspective, and maybe take a page or two out of her book if it resonates. And I you know I sure have because I think she has a really interesting way of looking at things. So I feel like there's this universal desire for our disabled children to be included with the rest of the family, right? Like it kind of goes without saying being included is important. And let me ask you this. Did you know that a robot could help your disabled child be more included with the rest of your family's shenanigans? I didn't either, until I discovered this fascinating company called Trexo Robotics. It all started out when a man's niece was told that she'd never walk. He set to work to prove them wrong by inventing robot legs that attach to her gait trainer and then to her own legs and gently moved them for her. They gave her the experience they never thought she'd have and pretty soon others were asking where they could purchase their own robot legs, and thus Trexo Robotics was created to meet that demand. If you're having a hard time envisioning what these robot legs look like in action truck so has some awesome videos of kiddos using their robot legs on their social media accounts: on Facebook and Instagram. They're easy to find. Both accounts are called Trexo Robotics, trexo being spelled t-r-e-x-o. One child featured on their social media accounts is Christopher, Melissa's son. This is what she has to say about what it's been like for them:

Melissa Schlemmer’s  5:26  
We have really been enjoying Christopher's Trexo. We love his robot legs for so many reasons. Of course, there's all the medical aspects of it, the weight bearing is great for his bone density, the gait pattern unit could help him improve his gait when he's walking in his gait trainer without the robot legs. But what we really love and what where we've seen a great benefit is in the social aspect of it. He's walking with his brothers, he's walking with his family, he's out in the community, and there just really isn't anything better than including your child in activities with their siblings and their family. We've really, really been excited to use it out and about, and hopefully it will also give him some improvement in his gait. And also he can gain some strength, some head control, stronger upper body, stronger core, all of those things. But all of those aside, just seeing your child upright and moving is priceless.

Madeline Cheney  6:32  
Gosh, I love this. And I'm so excited for families like Melissa's like get the benefits of Trexo Robotics legs. And yes, you heard Melissa right when she mentioned the health benefits. As it turns out, there are many health benefits to being upright and walking for everyone disabled and not so many health benefits, in fact, that Trexo is in the process of getting their product covered by insurance companies. With the help of studies proving those health benefits, you can head to Trexorobotics.com, which is spelled t-r-e-x-o, or there's also a link in the show notes, to verify if your child would benefit from their robot legs. And if so, to start working with them to get the funding needed to purchase them. They're a great company dedicated to making their products as accessible as possible for all families. We just love the heart behind trucks of robotics and are so honored to partner with them in the production of this important episode. A huge thank you to them for their generous support. So without further ado, let's jump into the conversation. Hi, Melissa, welcome back to the show. 

Melissa Schlemmer’s  7:46  
Hey, I'm so happy to be here. Thank you.

Madeline Cheney  7:49  
Yeah, I think today's topic of siblings is so important. And I'm really excited to really dive into that with you today. And I'm also excited because I feel like we can both share our experiences with our children's siblings, good, bad, and ugly. And it'll be awesome. 

Melissa Schlemmer’s  8:07  

Madeline Cheney  8:07  
So I would love to start out with this trend on social media, I guess of like, y'all have like maybe a picture or a video of a disabled child with their sibling. And I'm doing something really sweet with them. And then you know, like a little caption that says, if you want to know how to treat a disabled person, just look at how their siblings treat them. And I want to start out with this phrase, because I feel like we need to acknowledge the fact that like, that's not true all the time, right? Because that always bothered me with my daughter, who was older than my disabled son and treated him terribly in the first couple years, like horribly. I was like, no, I hope no one treats Kimball, the way that she treats him and then there's other people like yeah, I know foryou, It's been more of that scenario where like they do treat Christopher really well. And so I think this is like a just a really good way to acknowledge that there's a spectrum right of how siblings react to their siblings with disabilities and medical complexities. And it's important to acknowledge that.

Melissa Schlemmer’s  9:11  
Yeah, my oldest son is 11, Alexander, and he is a sensitive, kind child, that is just who he is. And he loves, loves Christopher, and he treats him beautifully. He always includes him. He finds activities that Christopher can do. And I have posted on my social media. Perhaps I've even said, I must be doing something right, because Alexander is so good with Christopher. And then I feel really guilty when I met with comments that say, Well, I must be doing something wrong, because my daughter doesn't do the same thing. And I want to recognize that. That's just how Alexander is. That's just who he is. Now my four year old, I don't know when he gets a little older if I could say the same thing.

Madeline Cheney  10:04  
Mm hmm. Yeah. And I think that's also even just taking in consideration things like their natural personality, right. Like you said, like Alex, he's very nurturing that way. But also, like, the order in which the child comes, I think can also affect it. And I'm not even sure which one is, quote unquote, better, or easier or whatever. But like, you know, whether, like, you have a child already, and then you have the child with disabilities, or that child came first. And then you have a younger one or for you, like, where you have one of each. Like, I think that can also impact it. And I think there is something to say to like, I don't know that if you have a child that the sibling isn't treating that child like you wish they did, or have a great relationship with them. I don't know that that means you're necessarily doing anything wrong. But I also think that there can be a lot learned from people like you were like, maybe you are doing something right. And like something that we can kind of like, okay, maybe if we try that, maybe it'll help. Maybe it won't. You know what I'm saying? So I feel like there's the nurture and there's the nature and like, maybe both of them are at play.

Yeah. And that could be. Alexander has always been nurturing to Christopher, he's always been accepting of who he was and who he is. And he's never expressed, at least to me, that he doesn't wish that this was the way his life was, or he doesn't wish that this was the way his brother was. But he's very, very kind to him. He's always trying to include him. And, frankly, he just thinks Christopher has the best life ever. He really does. He really thinks that Christopher has a great life.

That's awesome. I read a post, which is actually why I was like, we need to talk about this in an episode, but a post that you made on Instagram about like, how Christopher's siblings love him. And that you've also always worried about them resenting him? That's a really hard thing to grapple with. Gosh, like your life, in some ways would be easier. But like, it's awesome that Alex doesn't, he doesn't see it that way. Right? Like, I'm sorry, we have to leave this party early, or like these different things. I know. That's hard to worry about.

Melissa Schlemmer’s  12:20  
Yeah, cause we will be certain places that it's too hot outside, for instance, and Christopher can't handle the heat. So we won't be able to stay as long. Or it'll be sensory overload in certain situations. And we'll have to leave early because Christopher is very unhappy. And we have to leave. And it's always really, really interesting to me that Alexander is never thinking, selfishly, he's never thinking, well, gosh, I wish that we could stay. I wish Christopher wasn't having a bad time so that I could stay and I have a good time or that I want to stay. He always goes back to the thought of, I wish Christopher could handle this so that he could get more enjoyment out of it. I wish there was more to do at this park for Christopher. It's not, I wish that there was more to do for Christopher so that I can stay so that I can enjoy. It's always, that park isn't inclusive. So we can't go there. Because Christopher can't find something to do. It's always thinking about Christopher first and what he can handle. Alexander is not thinking about himself, being able to enjoy himself more or be somewhere longer. He's not wishing Christopher was a different way for his sake. He's wishing Christopher could enjoy and do other things for his sake.

Madeline Cheney  13:51  
That's so cool. I love that.

Melissa Schlemmer’s  13:53  
I know. And I don't even know how that happens.

Madeline Cheney  13:59  
Like this awesome. Like what an awesome human.

Melissa Schlemmer’s  14:02  
I know. He really, really is such a great kid. And, I think, he will hear me talk or hear me say certain things about people with disabilities are things like that. I don't think he understands why people aren't as accepting as people with disabilities or why people would think somebody like Christopher doesn't have a great life. Because I remember, he just said, Well, yeah, he might have a disability, he might have CDG. And then he said, but he lives his life just fine. And I thought, yeah, he really does live his life just fine.

Madeline Cheney  14:43  
And how cool to picture that too. I mean, just this exposure that these kids have to disabilities and just different types of people I think is so valuable, you know, like for them to go through their own little like, journey of acceptance. And maybe Alexander's process was very quick and immediate. And you know that happened. But I just think it's so cool to know that like these little humans are going out into the world with this perspective that I mean, like, I wish I had that perspective when I had Kimble right, like, right how awesome that would have been. It would have saved a lot of heartache.

Melissa Schlemmer’s  15:16  
I know I just love that he looks at his life, he looks at how he's affected. He doesn't have a negative connotation to it, I guess. He doesn't think, oh, his life is worse, or oh, because he will never experience the same things that I will experience, he must have a lower quality of life or something like that. He's never thinking that. It's amazing.

Madeline Cheney  15:43  
That really is amazing. So do you think that there's any like cons to Alexander's radical acceptance, and like, how positively he sees everything with Christopher?

Melissa Schlemmer’s  15:56  
I think for Alexander, because he is so sensitive, and he's a very selfless kid, that he will not bother me. Or if I'm doing something with Christopher, I've noticed this frequently, if I'm in the middle of a medical care, or if I'm doing something with Christopher, and he'll come running downstairs and wanting to tell me something, you know, obviously, it seems important to him because he's coming, running downstairs to say, hey, mom, hey, Mom. If he sees what I'm doing, he will retreat. And I'll say, hey, you know, what is it? What's going on? And they'll say, oh, no, no, no big deal. Nothing. So then that makes me feel the mom guilt, right? It makes me feel bad that he doesn't feel that maybe his needs are as important. And he doesn't feel that maybe what he has to say to me, is as important as what I'm doing. And that is always a worry of mine. And it obviously is something that he wants to tell me. And oftentimes, it's a new corny joke that he found. It's exciting for him. And I always want him to know that. But uh, you know, you can tell me, I can take time away from what I'm doing. And a lot of times, give me 30 seconds to finish up. But I think that for him, I think that he has it in his mind that maybe his needs aren't as important or aren't as necessary, as Christopher's. And that's something they always worry about that I don't want him to feel that way. I don't want him to feel that, no, no, no, you go do Christopher. Oh, no, you take care of Christopher. You do that. I don't want him to feel unimportant. I don't want him to feel that Christopher is more important than him ever. And that's always a source of this mom guilt for me, because I can just see it in his face when he comes to tell me something. Then he gets this like, Oh, you're busy, or you're doing something that light and his excitement in his face kind of dims a little bit. And then oh, no, I'll tell you later. So that kind of gives you a little pain in your heart because I don't want him to feel that he can't come to me with anything or that, at that moment, I might be a little bit busy. But you can still tell me what you want to tell me or say what you want to say.

Madeline Cheney  18:13  
Yeah, and I also wonder if it could even be because he's such a caring, empathetic person, like almost protective of you. Like I can picture him be like, Oh, I don't want to burden mom with this right now. Like she's busy. She has a lot going on. And this isn't that important anyway. I'm not that important anyway, because I feel like I have siblings who are like that to where they're like, I would do anything to help you. But I would hate to ever have to ask you for help. For me, you know. And so I almost wonder if it's like that kind of thing going on to like that protectiveness of you?

Melissa Schlemmer’s  18:42  
I think so because I think I'm one person. You know, I don't have anybody caring for Christopher, I don't have anybody else. Obviously, I have my husband, but we don't have any caregivers in our home. Because he will make comments. And he will say small things like, oh, geez, it must be hard taking care of Christopher. Just small things he'll kind of take note of. He'll just mention those things to me. Like you say, I think he'll say no, no, I don't want to bother mom. She's got enough on her plate. She's doing enough. She's busy. And I don't want to bother her. And yeah, he probably feels so he's protecting me in some way or not giving me more responsibility, but he's allowed it, right? It's like you are my responsibility.

Madeline Cheney  19:31  
Yeah, and I think it's so awesome that you're like aware of that because that's probably really tricky if you're oblivious to it. I feel like the fact that you're aware of it can, like, be so powerful just this little comment like I'm no buddy, like tell me in 30 seconds when I'm done. Like little things like that just to kind of like reassure him like no, you do matter. You matter just as much.

Melissa Schlemmer’s  19:52  
Yeah, I always want him to know that. No matter what I'm doing, no matter what I'm doing with Christopher, if we're in the middle of something that, I want to hear that corny joke. I want to hear it.

Madeline Cheney  20:04  
Yeah. Which is like, I don't know, I feel like sometimes, at least like for me especially in the beginning, the first couple of years of it, I was just like, trying to get my feet on the ground. When my older daughter, she was two at the time when she needed help, or like, she needed me in some way. I don't know, I felt like I kind of resented her in a way because I did kind of feel like I don't have that capacity right now. Like I don't have capacity for Kimble, let alone two children. And that hurts to feel that way to feel like you can't handle both when you know, like they both need me.

Melissa Schlemmer’s  20:37  
Right. And they deserve it. They deserve the equal time with you. But I think the reality of our situation is Christopher just requires more. 

Madeline Cheney  20:45  

Melissa Schlemmer’s  20:46  
That is the reality of it. There is no fairness, I guess, in the amount of time that we have to spend with each child and what each child requires.

Madeline Cheney  20:56  

Melissa Schlemmer’s  20:56  
That's just, that's just not the reality.

Madeline Cheney  20:59  
Yeah, and maybe like there is this acceptance, we can come to with that, of like, it's not going to be equal. And it's not going to be fair. But I can still parent and give this other child or other children, the time and attention that they need. Maybe most of the time, right? Maybe we can't do it all the time, or maybe for the first year. It's like, yeah, I'm not really being a very good parent right now. But like, you know, we can maybe trust in that like, equal time and attention does not equate to how much love we have for them.

Melissa Schlemmer’s  21:31  
Exactly. And I think Alexander being older, he does grasp that, my mom still loves me, my mom loves me so much still, you know, we tried to do small things that are just the two of us. And right now we're reading Harry Potter together at bedtime. So that is just something that he and I can just do together. And it's nobody else. And we've already put Christopher to bed. So there's no more cares for Christopher. And we tried to spend a little bit of time, just the two of us. From the beginning, I've always tried to not draw attention to, not now Christopher needs me. Not now, I'm doing this with Christopher, and not making this big point to say, I have to do all this for your brothers. So I can't do that with you.

Madeline Cheney  22:26  
I think that's like so profound, because I feel like a lot of times the tendency is to draw attention, like, let's talk more about disabilities. And let's show you exactly what the G tube does. And let's tell you like, you're gonna become a little guru on this. Like, I know, I felt that way before. But I think that's so profound to like, not draw this attention to him, like he's just Christopher.

Melissa Schlemmer’s  22:48  
Right, they are not his caregiver. Right, they are not responsible for anything to do with Christopher's care or anything like that. So they don't have to learn that he does know how to pause the pump. And he does know how to do that in the car.

Madeline Cheney  23:04  
That's nice.

Melissa Schlemmer’s  23:07  
When that beep is going, and I can't stop in traffic and I'm like, okay, you can pause the pump. But I don't want to put any responsibility on him to do anything for Christopher. And just like when we have to leave a place or a place isn't as accessible for Christopher, I don't try to sit there and like, well, this is not wheelchair friendly. And Christopher cannot walk and he needs a wheelchair, I don't try to bring all of this attention to that, about Christopher and like all of his medical needs and things like that for my other boys. Because like, I want them to see Christopher as Christopher. I want them to see him as their brother and not somebody who mom takes a lot of time to care for him or he has all these medical complexities, or he can't do this or can't do that. I just want them to appreciate Christopher for who he is and recognize who he is as their brother. And I think in the beginning, I also didn't want them to resent him. And the time it took for us to care for him that I didn't draw attention to all of those parts of his life because I didn't want them to know I mean, Christopher had a PICC line for probably two months and Alexander never knew. 

Madeline Cheney  24:29  

Melissa Schlemmer’s  24:30  
First of all, it was probably I didn't want him to notice it and be interested in it because he was young, and I didn't want him to touch it. Grab it.

Madeline Cheney  24:41  
Don't go anywhere near that. Top secret area.

Melissa Schlemmer’s  24:46  
Never knew and I think that's okay. I think that's okay, because that wasn't his responsibility. That's not something that he as a child needs to know. And I think that gets hard. I mean really hard for parents like us that have kids that have a lot of hospitalizations in their life, and they have all these things that I think that also gets hard. What do the siblings need to know? What do they need to? And what don't they really need to know? And do they need to know all the medical terminology? Probably not? Do they need to know how to set his pump and feed him? Probably not. They don't need to know that. They just need to know that he's their brother. And he loves to read books with them. He loves to interact with them. And we just had a squirt gun fight in the pool. They need to know those kinds of things.

Madeline Cheney  25:38  
Yeah. And I'm also thinking, like, from Christopher's point of view, and, you know, again, it's kind of hard to know how much he does understand around him. But like, I imagined that it would be also better for the child that does have medical complexities and disabilities too, to not constantly be like, we can't go here because of Christopher. Like, how's that going to make you feel like your mom's like, we can't go there because Melissa can't go there? Like, all the time. You know, like, I'm just picturing like, that would kind of suck.

Melissa Schlemmer’s  26:07  

Madeline Cheney  26:07  
And cause a divide between the siblings too.

Melissa Schlemmer’s  26:09  
Right. I feel like, eventually, like you said, it would be a divide, it would be separation, it would be, well, we're going here, he can't. So he can go here. We can go here, instead of finding things that we can all do together. And I always worried that they would be upset that Christopher was who he was, because it's just the reality of our life, right, that there are things that we can't participate in. There are things that Christopher doesn't find enjoyment out of. And I think that as you know, Alexander is alive. And so he's older, and he gets it. He really does get it now, Theodore, on the other hand, who's only four. Let's do this in three years. And then I'll tell you, right?

Madeline Cheney  26:54  
Yes, like part two. 

Melissa Schlemmer’s  26:56  
Yeah, he's as accepting.

Madeline Cheney  27:00  
Yeah. So like, how has that been like so far? Like, obviously, he's four. What has that been like for him? Like, this is the only life he knows right. And so I imagine that's a bit different than with Alexander or with my daughter, Wendy, you know, what's that like?

Melissa Schlemmer’s  27:13  
The only comments that he's ever really made about Christopher and his disability is, he can't talk. He'll say that a few times. He'll say, oh, his nickname, Theodore calls him doodle doo he'll say, doodle doo can't talk? And I'll say, yeah, no, he can't. But he can use his talker. And then that's it. I mean, he's four. So four year olds, they don't have the capacity to really think outside of themselves anyways, right?

Madeline Cheney  27:38  

Melissa Schlemmer’s  27:39  
But actually, he does occasionally read books with Christopher. And that's another thing I don't typically do is force interactions with them. I guess. I don't say okay, now, you're gonna sit down and you're gonna read a book to Christopher. I don't do that. If anything like that transpires, it's always a genuine interaction with my boys. It's not me, putting responsibility on them to do these things with Christopher. And they always take it upon themselves. Christopher can't use a squirt gun. He can't do that on his own. But we were in the pool. And Theodore said, Oh, here's a squirt gun, because all the boys were having a squirt gun fight. So I held Christopher in my arms and hand over hand, we did a squirt gun fight. But they didn't say, you can't be part of this because you can't hold a squirt gun. I think too, because they don't focus on what he can't do. And maybe that's because we don't focus on what he can't do and what he can't participate in, in life.

Madeline Cheney  28:49  
Yeah, I think that's, again, so profound, like so simple. But like, wow, that makes so much sense. And I think you also keep talking about the age appropriateness. And I think that's another thing to keep in mind. Because I think, honestly, like, that's one thing that I did terribly wrong with my daughter, where she was two when Kimble was born, and I wanted to include her in everything. I was like, Look, this is his feeding tube. And look, we squirt the syringe and you can help me flush it and things like that. And like, I think it is too much like their, to their for their 11. You know, and so I think like recognizing, like, this may feel therapeutic to be teaching my child. It's just like, she's not my therapy. Like, I'll go like, I don't know, figure this out somewhere else. But like, I think just keeping that in mind of their age and what is appropriate is really important,

Melissa Schlemmer’s  29:35  
Right? And if they're interested, that's one thing, but I think that if they don't want to learn, then they don't have to learn. I mean, they're children. Yeah, they're just their siblings. They're just brothers. They're not a paid caregiver. They're not a caregiver. They don't have learned any of that unless they really want to.

Madeline Cheney  29:58  
Yeah, and that right there, I think releases like a lot of like what could have been a burden on the siblings that they could resent them for? Like, if they don't have that burden, then like, there's very little to resent in the end, as well as being aware of like, okay, I give more time to this child, how can I have quality time? So you know, meeting those needs as well. I think that really sets up your family for success, because none of us want our kids to resent each other. Like, we don't want them to have that divide. We want them to love each other and be friends.

Melissa Schlemmer’s  30:28  

Madeline Cheney  30:29  
And so that really is the goal, right, for all of us that have multiple children. And so, yeah, I just think that's a great point that you've made. 

Melissa Schlemmer’s  30:36  
I think that, you know, I have two siblings. And I don't know? I don't know? Because yeah, like you said, if you were constantly being expected to help out with certain things, because as you know, our kids with medical complexities come with a lot more a lot more responsibilities, and his brothers don't need to hold any of that. 

Madeline Cheney  30:36  

Melissa Schlemmer’s  30:36  
I don't want anyone to ever think that I think my way is the right way, or my way, is the only way. Because, you know, if you want your six year old to learn how to do a water bolus, that's your parenting, you know, like we said about the same kind of idea about watching siblings and how they treat their sibling. And that's the right way to do it. I don't want anyone to ever think that I think my way is the way to do it, because it just happens to work for us. And it just happens to be the way I look at my boys. 

Sidenote, my mom had a brother, who passed away in his ninth brain surgery when he was four years old. And my mom was his caregiver. My mom was a teenager. My mom had all of these responsibilities put on her. The doctor actually had called my mom, this was back, you know, no cell phones. This was you know, 50 years ago, 60 years ago. They called and my grandparents were on their way home from the hospital and what had been, my uncle had to go into his brain surgery, and they needed permission. And my mom, a kid gave permission, and he actually passed away in that brain surgery. So I always like, I think my mom holds responsibility. And it wasn't her responsibility. And I think for me, I always know my mom's story and what she had to go through growing up, and the way my mom was treated. This was so long ago, right? I mean, when she would take her siblings. He was hydrocephalus. So he looked a little bit different. And this was when kids like ours were being put into homes, and they didn't live with families. And my mom went through a lot in her young years of having a brother that was disabled, and she had to care for and she was responsible for and she had to bring him to the park. And she was teased, and he was teased. And so I think for me, I have these thoughts of my mom, and I don't want my other boys to ever feel a responsibility or ever feel the way my mom did, I guess.

Madeline Cheney  33:28  
Yeah, like you're protecting your boys. And I'm sure that does inform everything you do, like at the back of your mind of like, I don't want them to be put in the same situation that your mom was in, right?

Melissa Schlemmer’s  33:38  
I just want them to love and know Christopher, as their brother, and not as somebody who lives in their house, that takes a lot of time. And takes mom away from them, right?

Madeline Cheney  33:55  
Totally. Well, like I'm just thinking to, like, there have been moments to where like, I'll be on my Instagram page. And I know this is how a lot of those of us have Instagram pages, how they look. She was like, why there's so many pictures of Kimble, like what about me? And I was like, oh, my goodness. And then also, also, she's asked me, Mom, why don't you talk about me and your podcast? So I think it's like this. I don't know...

Melissa Schlemmer’s  34:22  
No, they matter too. And that's so hard.

Madeline Cheney  34:24  
They do. 

Melissa Schlemmer’s  34:25  
It's so hard. You are so important. 

Madeline Cheney  34:29  
Like, my Instagram page or like my podcast, whatever. Like, this is not a full illustration of my life. But it's hard though as like kids or even teenagers. I mean, she's pretty mature. So like, the fact that she like caught on to that. You're like four, why are you asking about this? I just think there's also that that we kind of have to deal with too of like, how do we explain and should it be that way? I don't know. These are just the questions I'm putting into the void but that's the tricky part of this too.

Melissa Schlemmer’s  34:58  
I actually, for the longest time, like you say I share a lot about Christopher. I share a lot about our life raising a child with a rare disease. That's what I do. 

Madeline Cheney  35:10  

Melissa Schlemmer’s  35:10  

Madeline Cheney  35:10  

Melissa Schlemmer’s  35:11  
I have had people in a while or new followers or something that they'll say, oh, you have an older son? And he's loved and cared for it. Our life really isn't all about Christopher which...

Madeline Cheney  35:28  

Melissa Schlemmer’s  35:28  
...If you get a glimpse of social media, or I mean, that's one second in our life if we post a photo, right, but what you didn't see are the 15 photos I took of everybody else or them all together. So that is so hard. And Alexander, I think, he's to the age where he'll say, Oh, you can post that. Or he'll say, I don't want you to post that. And I'll say, okay, so I try to respect his wishes in that. And so you might not see him for a while.

Madeline Cheney  36:02  
Totally. And it really does go back to like, this little part of social media is not representative of my whole life, right? Because a lot of us that are active on there are specifically talking about raising a child with disabilities. And I think it's also important because we're able to create a community where we can, like, relate with each other and have that solidarity. And like, you know, kind of normalize that type of thing. It definitely can be a twinge of mama guilt to be like, oh, honey, no, no, like, I love you know. Again, why don't you just like feel like I need to justify this or like, convince people or like, prove that I love my other children too. But...

Melissa Schlemmer’s  36:38  
It's so crazy. 

Madeline Cheney  36:40  
It is.

Melissa Schlemmer’s  36:40  
And like social media, it's beautiful. But at the same time, there are things about it that are not, but you're just really seeing 10 seconds of our life sometimes, or one tiny picture. And that's not the true whole picture of it all.

Madeline Cheney  36:58  
Totally. Well, I would love to wrap up with, so there are quite a few in the audience that I've heard from that have a child with a disability, and are trying to figure out if they want to have more children, right? And like what that would look like and what that would mean. And I'm sure a lot of them are listening right now. It's kind of like, okay, like, what could this be like? How do we want to do this? So I would love for you to speak to them. What would you like to share with people who are considering whether or not they want to have more children?

Melissa Schlemmer’s  37:28  
Oh, man. I think that having Christopher and having a child with a disability definitely gives you this greater perspective on life. But then when you see seeing your child with a disability with their siblings, I think that gives you an even greater perspective on what is important and what joy and happiness and gratitude and all of that looks like. I think it's really, really fun to watch their relationships grow and to watch how they all become these amazing little people. And I don't know that I completely subscribe to the thought that people with disabilities are here to teach us things. You know how you heard that before? 

Madeline Cheney  38:26  
Yeah, yeah, yeah.

Melissa Schlemmer’s  38:26  
But I do think that the lessons that Christopher has taught me and taught his siblings are all life lessons that they would never ever, ever learned anywhere else. And the way Alexander is as a brother, I am so proud of who he is. And I really cannot wait to see who he becomes in life and where his life takes him. I mean, Theodore too but he's only four. But where his life takes him and how Christopher has shaped him to be this kind and caring individual and what that means for his future.

Madeline Cheney  39:08  
Yeah, I was thinking that as you were talking about Alexander and his nurturing character and wondering like, hey, like, how much of that came from being his brother? And really honing that or maybe like really developing those characteristics that probably were already inside him but like, really developing those even more.

Melissa Schlemmer’s  39:26  
Right. He already was like a kind of a cautious sensitive kid. But I think having Christopher probably emphasize those traits in him.

Madeline Cheney  39:39  
Yeah, I second what you say they're, like, have the extra layer of depth and like, obviously, for both of us, like we don't know what it's like to have only a child with a disability. But I do think it just adds another layer, sometimes of hard but also awesome seeing them interact and just having like, I always tell my daughter, Wendy, she's like, Mom-- and this just illustrates how this has been like-- do you love Kimble more or me more? I'm like, oh, Wendy. Like, I love to tell her like, my heart is so big and my heart was completely full of love for you when you were born. And then when Kimble came, my heart just got that much bigger. And now it's full of for both of you, and it just keeps expanding it's not taking away my love for you. And I think, I don't know, I'm not gonna sit here and tell people you need to have more children, if you... 

Melissa Schlemmer’s  40:24  
No, right. 

Madeline Cheney  40:25  
You know, that is such a personal thing. But I will say like, if that desire is there, it is amazing to feel your heart grow. And that's disabled, non disabled, whatever. Like each time you have a child, it's just that expansion of your capacity to love.

Melissa Schlemmer’s  40:38  
Right, and you can love another human being. I think for us, you know, when we had Theodore, we were kind of like, mostly for us is how are we going to manage the time? How are we going to have enough time for another just...


Yes. How would you do all of this? And you do. You just do just like you love another human being? Remember when you had that first one, and you didn't even know how you were going to love another one?

Madeline Cheney  41:11  
Like, this is impossible. There's no way. Then you become, you're like, okay, yeah. Wow, how is this happening again?

Melissa Schlemmer’s  41:19  
And you just do, and I think it was different for us having Theodore because I really marvel at typical development, really marvel at that. It really is a miracle. It's a miracle. And it's so beautiful to be able to watch that, and appreciate that. But it doesn't take away from how much I love and appreciate Christopher for who he is, right? We can experience a lot of different things at the same time. Right?

Madeline Cheney  41:47  
Yeah, well, it just affects that lens, right, that you see everything through. And so yeah, I've heard that from a lot of parents, too, that have like a child after the child with a disability and just like, in awe, like, how are you sitting up on your own? I need to do therapy for that. Like, we are not there yet. And I'm like, that's going to be out of this world. Because obviously we had that with Wendy but like, we had no idea. We just expected it. But now to be like, You did that without any PT. I'm not buying it. How do you do that? You know what a miracle, like magic.

Melissa Schlemmer’s  42:16  
Yes. That's been really fun, too. Because like, with Alexander's, kids just do that, that's how it goes. They don't do that. And then when Christopher did not do that, and so with Theodore, it's been so fun to just see how his brain works. And hear the funny things that come out of his mouth and how clever he is. And actually sit in that moment and appreciate it and not take it for granted.

Madeline Cheney  42:43  
Yeah. And like you say, it doesn't detract at all from how you feel about the older child. It's like, I have a deep appreciation for Christopher and I have a deep appreciation for Theodore. Like you say it can all be there all the feelings. There's no like shortage of like all these different emotions and perspectives that you can have. And yeah, just adds quite a depth of life.

Melissa Schlemmer’s  43:04  
Yes, the perspective I think it's just different. Very different.

Madeline Cheney  43:10  
Yeah. Well, thank you so much, Melissa. This was such a great conversation, and I am so grateful that you came on to have it with me.

Melissa Schlemmer’s  43:19  
Oh, I am so excited. I'm so excited. I had a great time talking with you.

Madeline Cheney  43:25  
You can find Melissa and me on social media by following the links in the show notes. You can also find links to the other sibling episodes mentioned in the intro. Okay, so this episode was the perfect precursor to next week's episode with Amanda Griffith Atkins. Again, all about family planning. And this one is super fun and unique because we included several of your insights into this really crucial topic via audio messages. So we just really want to cover all the bases when it comes to family planning, hearing from people who've decided to have one and done people who've decided to have more children and why and how that's worked out for them. For those who are carriers and have used alternative methods of having more children like IVF or adoption. I just I know there are so many of you that are kind of on the fence of whether or not to have more children and so this episode is especially for you. This is an epic episode and you don't want to miss it. See you then.

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Ep. 119: Your Child’s Medical Team | How to Push Back, Ask Questions, and Build Your Dream Team w/ Dr. Kelly Fradin, MD https://d3ctxlq1ktw2nl.cloudfront.net/staging/2023-2-23/319744619-22050-1-1e2071eee4df4.m4a


Hex Code

68: Dipping My Toes into Educational Advocacy