Ep. 97: Melissa Schlemmer’s Story | A Rare Disorder Affecting the Brain + Radical Acceptance

 

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Summary

When Melissa knew something was up with her infant-son Christopher nine years ago, she reassured herself that as long as his brain was ok, they would be ok.

So, when his neurologist told her about his rare disorder and the way it affected his brain, everything crumbled around them. After years of navigating all the sub diagnoses that come along with his syndrome, Melissa has come to a place of radical acceptance of her son’s disabilities.

In this episode, Melissa shares this and more.

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Episode Transcript

Melissa Schlemmer’s  0:00 

I don't grieve anymore that he's not going to walk unassisted. That part is no longer this, like, source of pain for me. I think more so, the surgeries, the hospitalizations, the potential that an illness could take his life.

 

Madeline Cheney  0:22 

Hello, you're listening to The Rare Life. I'm your host Madeline Cheney. I am so thrilled to give you Melissa Schlemmer’s story episode. Melissa's nine year old son, Christopher, has a rare brain disorder that affects many systems of his body. In this episode, she shares what it was like to notice that something was different about him as a baby, and to be reassured and blown off by doctors, only later to have her suspicions confirmed. We talk about the grief that she grappled with for the first few years and the way that that evolved into a sort of radical acceptance of his disabilities, and how liberating that has been for her. And, you know, I think we're all at various points of the spectrum of acceptance of our children's disabilities and medical complexities. I really believe it's a journey. And, you know, we all get there at different points. And, I feel like where we are in that process can totally affect how we view our children's therapies. If we are still in a denial stage of our children's disabilities, I think we often see therapies as a way to quote unquote, fix them, to make them as non disabled as possible. And you know, I've totally been there and I actually still I have to fight against that subconscious pressure. But I think when we get to that point of acceptance of their disabilities, you know, therapy is viewed as a way to help our children reach their own unique potential, whatever that means for that child. And, you know, for Melissa and Christopher, Napa Center therapy has been an integral part of that. Napa Center offers pediatric therapy, including PT, OT, feeding therapy and speech. Of their experience, Melissa said:

 

Melissa Schlemmer’s  2:38 

Chris has been going to Napa center for seven years, and I guarantee you that you will not find another place or people that believe in your child more. And for us, it's not just therapy. It's hope.

 

Madeline Cheney  2:54 

I love that. You know, as we know better than anyone else, having a great therapy team for our children makes all the difference. So I bet most of you have heard of Napa center. It is quite infamous among medical mamas for their three week intensive therapy sessions, and they're super long weightless, but they've been working to expand their locations and their team to offer more ongoing weekly therapy sessions. And for the first time, in literally years, they have openings. Napa center is opening a brand new clinic located in Chicago, which opens on October 24th, and they are currently accepting new patients. So if you live in the area, this is your chance to snag a spot before they fill up and grow a waitlist of their own. If you don't live in the area, but no have another medical mama who does, be sure to let her know. You can find a link in the show notes for their website to sign up or learn more or just visit Napa center.org. That's n-a-p-a center.org. A huge thank you to Napa center for generously sponsoring this beautiful episode and making its production possible. All right, a little bit more about Melissa and her fam, and then we'll dive right in. Melissa lives just north of Twin Cities in Minnesota with her husband Ryan and three sons: Alexander who is 11, Christopher who is nine and the star of today's episode, and Theodore who is four. Before Melissa became a full time medical mom, she was a personal care assistant for disabled people for 11 years-- which I think is just so cool how that works out. Melissa is a lover of books and baking. Alright, let's dive in. Hi, Melissa. Welcome to the show.

 

Melissa Schlemmer’s  5:05 

Hi, I'm so happy to be here. Thank you for having me.

 

Madeline Cheney  5:08 

Yeah, I'm thrilled to chat today. I am so excited to hear about your experiences with Christopher and ways that your life has changed and how you have changed because of him and your experiences with him. I would love to start out with the time that you found out that Christopher was any different than your other children or that he had any kind of disabilities or medical complexities. When did that start for you guys?

 

Melissa Schlemmer’s  5:31 

For us? I think with Christopher, I knew pretty early on that something was just not quite right. He wasn't holding his head up. His eyes would drift he had nystagmus and his eyes would cross. So, I kind of had this feeling inside that something definitely wasn't quite right. Christopher was born in April. And father's day evening, we ended up calling an ambulance for him because he was really not responding. He was extra lethargic and that moment kind of solidified that I was kind of right. I was right, although I didn't want to be right. And even that hospitalization, nobody brought up the fact that there could have been something off. They just said, Oh, sometimes when babies are really small, and they get an illness, it can really take them down. But we left that hospitalization without any answers as to if something really was amiss with Christopher. And that's kind of when I started fighting for him. And fighting for something is wrong. Something isn't right. But every provider I saw just kind of shoved in a way and said, oh, all kids grow at their own rate. Some kids aren't strong in the beginning and things like that. It was hard because nobody believed me, which then made me question if I was right, and then it made me have this false sense of... I don't want to say hope, but false sense that, oh, maybe I'm just overreacting, maybe I'm wrong. Maybe he is perfectly fine. And maybe nothing is quote, wrong with him.

 

I kept going to the pediatrician. And I kept saying, He's not holding his head up. He's not holding his head up. And finally, at six months, I said that least let us go to physical therapy, or at least let me get him in therapy. So finally, at six months, he started physical therapy. He had a couple of surgeries at six months old, which also are common in his disorder. But we didn't know it at the time. And even the doctors there, they would say to me, Is he always like this? Because he was just like, he would jus  t lay there. He couldn't do anything. And he was just laying on the bed. And he was small. And I kind of was like, Oh yeah, he's like this, but sometimes he's more active. And I think that was my way of protecting that Oh, no, nothing's wrong with him. He's more active than he does more than this. When really he didn't. And maybe he would bat at a toy. And to me that was like, Oh, he's doing more. He's doing more than what I really think that he is. So it was then that we had that and we ended up seeing an endocrinologist, because he was really tiny. He was very small. And the endocrinologist reassured me, oh, if it's just hormone related, if it's just this, oh, we can give him meds and we can fix that problem or whatever. If so then that gave me another sense of hope that, okay, things are gonna be just fine. Things are gonna be just fine. This is.. I don't want to say easy, but this is something we can manage. This is so manageable. I kept hitting these instances where I would kind of go, oh, well, that's manageable. Oh, well, that's fine. So we saw the endocrinologist, she ordered a MRI of his pituitary gland, actually, just to see if it was smaller than normal, if anything was wrong with it. And we left that appointment, and I got home and probably within 10 minutes, I had a phone call from a neurologist. And the neurologist had said, I'm really worried about your son. And she said, I think that he has congenital disorder of glycosylation. And then immediately, she said, Don't Google it. And I want you to come into my office, you know, this week sometime.

 

Madeline Cheney  9:45 

Wow.

 

Melissa Schlemmer’s  9:46 

I just cried. I just cried because I just I don't know why but all along in my head. I kept thinking as long as his brain is okay, as long as his brain is okay, like we'll be okay. As long as his brain is fine, and then when she said his cerebellum was extremely small, and basically, it will shrink over time until there's nothing left. And so I think that hit me like, Okay, I was right all along. And not only was right all along. But yeah, it took me by complete surprise, and it just wasn't what I wanted to hear.

 

Madeline Cheney  10:25 

Yeah, I think that happens a lot where like, when we initially get these diagnoses, or we find out something's going on with our children that we didn't expect, that feeling of like, Wait, this was my worst case scenario, you know what I mean? Like, obviously, the very worst would be them passing away, like, we acknowledge that, but like, I think we do have these preconceived notions of what quality of life is and what we expect for our children. And like you say, like, as long as the brain is okay, we're okay. And then for that to happen, I feel like that just kind of changes how you see the world, right? Like, for the type of worst case scenario happening is just it shifts things,

 

Melissa Schlemmer’s  11:03 

Oh, big time, because there was all these other scenarios. I thought, Oh, we can get through that. Oh, that's manageable. Oh, we can handle that part. But then I just had this idea in my mind that if his brain wasn't okay, then I wasn't going to be okay.

 

Madeline Cheney  11:22 

Yeah, like, almost. Okay, I can handle that. And I can handle that. But I definitely can't handle that. And so when that happens, it's like, well, shoot, I can't handle this, that feeling of like, I can't handle this, which again, I feel like that is something I'm sure that most parents listening right now has experienced in one form or another. I can't handle this. But I have to. I mean, it's just surreal. Like it just hurts, right? Like, it just feels like that overwhelm and that despair, really, of like, I'm not capable of this.

 

Melissa Schlemmer’s  11:52 

Yes, this was exactly what I didn't think that I could manage. Or this was something I absolutely didn't want to be true. That was what I didn't want to be true.

 

Madeline Cheney  12:05 

So what was that like for you? In those like ensuing weeks and months of adjusting to that diagnosis?

 

Melissa Schlemmer’s  12:11 

We went to her office, and we had this discussion of what he had and what it meant for him. And my husband actually asked, because, of course, we did look it up.

 

Madeline Cheney  12:23 

Like, how do we not Google this?

 

Melissa Schlemmer’s  12:27 

Who doesn't look it up, right?

 

Madeline Cheney  12:30 

It's impossible.

 

Melissa Schlemmer’s  12:30 

And he wasn't quite one yet. And there's a statistic that 30% of children with this disorder passed away before their first birthday. And he wasn't one yet. And no one wanted to ask that. No one wanted to ask her like, what do you think, you know, but then my husband just outright he came and said, What do you think? We read this statistic. And she actually knocked on the desk and said, well, he's almost one.

 

Madeline Cheney  13:06 

Oh man.

 

Melissa Schlemmer’s  13:09 

But I just remember being in her office. And she had this big whiteboard there. And she was kind of writing on the whiteboard. And I was holding Christopher. And all I wanted to do was wrap him up in my arms and run away. I had no idea where I wanted to run to, but the instinct of mine just kicked in that I just wanted to run. And I wanted to protect him from all this. Maybe if I ran far, maybe if I ran from it, it wouldn't really be true.

 

Madeline Cheney  13:41 

Yeah.

 

Melissa Schlemmer’s  13:42 

And then you get home and you kind of go okay, well, you know, this is happening. This is what is now our reality. And in some sense, there was this feeling of relief that now we knew. Now I wasn't constantly second guessing myself. And now I wasn't either trying to prove that he was fine, because I would do that too. I would sit him up, and I would have him hold his head up. And I would, Oh, you did it for three seconds. Oh, okay. Okay, you're fine. So, yeah, that was gone. I didn't have to prove to myself anymore, or I didn't have to try to convince myself that he was fine. So that at least there was this relief that I didn't have to play this game with myself trying to talk myself into the fact that he was going to be just fine.

 

Madeline Cheney  14:36 

Because you could process it now. Right? Like, I feel like there's that feeling of like, Hey, let me like, either find out it's there isn't but I need to be able to, like start working through this. And a year is a long time, I guess six months of suspicion, to not know what to kind of vacillate between the two not really know how to handle it.

 

Melissa Schlemmer’s  14:54 

Right? So now I could look at other kids with his disorder and I could kind of go: Okay. Okay, this is what's going to be our reality. And this is what is going to happen. And okay, well, I can handle that part. Oh, I can, you know, and then I kinda start just imagining, now that's my child, because before my child was not that there wasn't anything going on with him. And so yeah, we could start processing and just getting used to that this was, this was who he was, and this was our reality.

 

Madeline Cheney  15:29 

Yeah, I also like love, or not love, it resonated with me when you were saying that you wanted to just take him and run. Because I feel like, I mean, I don't know, maybe I'm not as selfless as you when I was in the first year with my son Kimble. And we were in that like, just receiving new diagnoses is what it was for us. So we just kept on like finding out thing after thing and kind of like I can't handle anymore. And like, here are some more diagnoses. And I just remember, like, I just want to leave. And it was a really scary feeling to be like, I just want to leave my husband and my two children. And I just want to go, I don't even know where I want to go. Like you say, like, I don't, I don't think it would fix anything. But I think it's almost like this flinching from the pain of like, this hurts too much. So like, my instinct is to run or to flee. But then to know, like, I can't do that I can't like just leave and it won't fix things. And I think that feeling, I don't know, I think a lot of times, it's a feeling of being trapped of like, I can't escape this. This is my life now. And it hurts so bad. But I can't handle it. But I have to. I imagine that that feeling of wanting to run or flee in some way is probably pretty common when you're first adjusting to everything.

 

Melissa Schlemmer’s  16:40 

Yeah, I had no idea where I would have gone. I have no idea what the exact purpose of that was. But that is what I wanted to do. I just find to like, you know, maybe it's kind of that head in the sand thing? Like if I don't see it. If I'm not around it, then it's not there. And I don't know if that's maybe what I felt that. If I just leave it all, then it's not true.

 

Madeline Cheney  17:04 

Yeah. So interesting. Because I think our brains do that kind of thing. Like, in the face of these pre-traumatic experiences and these traumatic conversations and adjusting to things that are really scary for us. All these versions of totally weird things that our brains do. I mean, like, they're all normal, I'd say. So, as time went on, did things get easier for you guys, as you adjusted?

 

Melissa Schlemmer’s  17:30 

The beginning was so hard because like you say, you're just being hit with one thing after another. It's, okay, not only does he have this rare disorder, it is a disorder of glycosylation. And every single thing in your body needs to be glycosylated. So there was this potential for everything and anything to go wrong. So you're being hit with, okay, not only does he have this, and what does it mean? Because that's just the main diagnosis. And as you know, the cause main diagnosis, and then under it, are all of these things that come along with it. Yeah, so it wasn't just, Okay, well, he has low muscle tone, he has hypotonia. That wasn't just that, you know, and then it was his vision, his hearing, you know, it just was everything kind of, I would leave those-- oh, my goodness and I'm sure you can relate to, but it would just leave those appointments, sitting in the parking garage with just tears streaming down my face, that it was always these additional things kind of happening to us. It was one thing after another, and in the beginning illnesses, and illnesses are always going to be something that his body struggles with. So that's really hard, protecting him from germs, but giving him a good quality of life and experiencing life with everybody and his whole family and everything. There's always this risk analysis of do we do this? Do we not do that? Is he going to get sick? Is he not going to get sick? So I think in the beginning, there was obviously a huge learning curve, huge learning curve of what does this mean for him? Because I'm sure as you know, every disorder kind of has a spectrum of severity and a spectrum of how it affects each child. And I kind of clung on to this hope in the beginning of I watched a lot of kids with his disorder that aren't as severely affected, I guess. And I specifically remember a video of a child climbing up the stairs when he was four years old. And for some reason, that was a benchmark that was oh, if he's crawling up the stairs by the time he's four then okay, that's fine. That's fine. That's great, we can handle that. And I mean, Christopher wasn't even sitting up on his own by the time he was four. So he was a little bit more severely affected, especially in the gross motor. And in hospitalization aspect of it. And sometimes the way illnesses hit him are different than a lot of other kids too. So for me, it was wrapping my head around that there's this spectrum, and we may not be where I wanted to be, or we may not be where I kind of envisioned where he would be. And then he hit four, and he still wasn't doing all of those things. And then I thought, okay, well, someone's got to be on this end.

 

Madeline Cheney  20:43 

Yeah, and like we all hope that our kids won't be asking you to, like is that ableist I don't know, maybe in like, some ways. But at the same time, we also just care about our kids, and we love them. Also, it's a natural tendency to want the least amount of work in therapies and appointments. I just feel like that's a very natural thing to be like, oh, but we'll be on like the more mild end of that. If we can just be on that side. We'll be okay. Right, that kind of those if then. If he can climb the stairs by the time he's four, then we'll be okay. But like you say, some of us have to be on the more severe end of the spectrum. And I've had similar experiences, I'm sure a lot of people listening have, okay, well, like, things are so hard and really severe or whatever. So surely this won't happen too, right? And I think that's kind of like when I found out I was a carrier for my son's condition. I just was like, naively like, well, there's no way because things are already so hard. I can't handle another thing like that. And also just was like subsequent diagnoses of like, Oh, I'm sure he won't have that part of it. Because I don't know why I think this was kind of like entitlement, maybe? I don't know. Like, that's, like, I'm not gonna have that. Yeah, like we filled our quota, which all of us learn really quickly. Like, that's not really how...

 

Melissa Schlemmer’s  21:54 

No. I do, I think that it was, well, he's got enough to deal with. It's not just me, it's him. He has already so many things to try to manage as a tiny little boy, as a little boy. He can't speak. He can use his AAC. He can use his communication device, but he can't verbally speak. There's always these things that I thought, why does it have to be him? Why does he have to keep getting things stacked on top of him? And I think for me, it was mostly I want to give him some independence. I want him to have some independence in life. So that's why I thought, well, he can do those things, if he can crawl up the stairs. And if he can have, I don't know, more independence. And already at this point, I think we knew a wheelchair was in our future. As he got older, the reality of who he was. I was able to accept that more, if that makes sense. I think as he got older, as I saw how globally delayed he was, I don't always love delay, because to me, delay means you'll eventually get there.

 

Madeline Cheney  23:06 

Yeah...

 

Melissa Schlemmer’s  23:07 

He won't, you know, that's the reality of the situation. There are a lot of things in his life, that he won't eventually get to those things or those certain gross motor skills, right. I think as he got older, it was easier for me to accept that. This is how his body is affected by the disorder, I can look at pictures and videos of other kids. And that's how their bodies are affected. But this is who he is. And this is how he is affected by his condition. And I want to say it's probably it's only been in the last two to three years that that just full on total acceptance has probably come to me. I think that I still have a whole lot of hope for him. And I still have these little expectations. You know, just for me things that I hope that he achieves in his life. But also at the same time if he doesn't, I'm not gonna cry about it like I used to. For me, I've full full acceptance of who he is his disability, how his disabilities affect him. Those parts I think I can separate from the medical aspects of who he is. I don't grieve anymore, that he's not going to walk unassisted. I don't grieve about that part. That part is no longer this like, source of pain for me. I think more so what's the source of pain for me is the procedures he has to go through, the surgeries, the hospitalizations, the potential that an illness could take his life. Those are the things for me that are sources of pain. It's not that he has a disability, it's not that he's disabled. That means to use a gait trainer or wheelchair or a AAC device. I don't grieve those things anymore. But in the beginning, yes, you know, when you have an 18 month old, and you're trying to wrap your brain around the fact that he will be in a wheelchair, or he won't be able to walk, or you are just praying for him to say, Mama. Things like that, yes, I would cry about that. Those were sources of pain, but not anymore.

 

Madeline Cheney  25:37 

When I think like, that's so cool to come to that radical acceptance, like you say, I love how you differentiated of his disabilities. And I think that a large part of that happens, because you grieved about it previously, right? Like, we are so subject to our society's ideas of what a quality life looks like. And a lot of times that, oh my gosh, how sad. He's in a wheelchair, oh, my gosh, how sad she can't talk or things like that. And so that's how we were raised. We were raised in this society that sees it that way. And so of course, we need to process this, and all the grieving and the crying that you did in the first few years, like, we're not even gonna venture to guess that they were hugely impactful to your radical acceptance now. And I think, so if you are following disabled adults and stuff on like social media, which is a really cool thing to do. I think there can be some shaming if we talk about having a hard time with our children that have disabilities. But I'm always like, well, let us grieve, let us process this. And then we'll come to that point where we can radically accept it like you have. And I think recognizing that it's a journey and a process that we need to go through can give us a lot of self-grace and compassion as we're going through that. How was that felt for you to have that acceptance of his disabilities? Now?

 

Melissa Schlemmer’s  26:59 

I think it's freeing. I think it is so freeing. And for Christopher, I think that, obviously, we don't have this conversation, but I accept him as he is who he is. I am never ever wishing he was somebody else. I'm never wishing he could perform better or do something else. I'm not wishing that upon him. And I always think of like, Would I want my mom to be wishing I was someone else? I mean, absolutely not. I know, my mom loves me unconditionally, and my mom appreciates who I am. And she's not wishing for a different daughter. She's not wishing for somebody else. And I think when I had that little revelation of Christopher has a genetic condition. So me wishing he could do all the same things that his siblings do, means I'm wishing for a completely different child, because Christopher is who he is. He was made this way from the start. And I accept him as he is. And it just, I think, for me, I'm able to find so much more joy in life, joy in who all my kids are.

 

Madeline Cheney  28:17 

I think that our capacity to unconditionally love people grows as we're in this world, and not just being exposed to our own children, but also like other children with disabilities-- whether it's on social media, or in different groups that we get together with other parents and other kids. I just feel like, at least for me, like, I feel so much more accepting of other types of people and not just in disabilities, right. Like, always, I feel like it helps us become less judgmental. It's like, you know, what, what is quality of life? You know? Yeah. And I think that's kind of what it comes down to.

 

Melissa Schlemmer’s  28:52 

 Yeah, definitely. I just think seeing Christopher for who he is, and appreciating who he is and not who he isn't over the years has brought just this different perspective that a lot of things in life really don't matter. Yeah, especially okay, like we're on social media and the world of social media is mostly the highlight reel and showing all of these things. But I think that also I share a lot about Christopher and I show how amazing he is and how amazing his life is. And I don't want to say like you can still have a great life with a disability because that sounds ableist. But I just want the world to know that Christopher is who he is and he has a really amazing life with a disability is not in spite of or it's not despite it's not Oh, even though he has this it's that he's disabled, and he's amazing.

 

Madeline Cheney  29:52 

Yeah, I really really liked that. And then can we like also addressed so you mentioned you kind of the differentiation between I mean, his disabilities, and unlike his medical complexities are things that necessitate medical intervention. And I actually recorded a whole episode about this, in the last season about kind of like these different types of disabilities, like I've come to this acceptance of-- I'll call it disabilities, but like the can't walk, can't talk, that type of thing. But I will always be sad to see him go through things that are painful, or procedures or medical things that are just hard for him that cause suffering. So you mentioned that you haven't really like come to that same acceptance of that, that still makes you sad. So how has that evolved? Or as it evolved over the years? Or is it make you just as sad as it did in the beginning,

 

Melissa Schlemmer’s  30:40 

I think certain things I have come to accept that, okay, these are just parts of Christopher's life, you know, lab draws. They're not fun, they're not fun for him, they're not fun for me. Takes three Tech's to hold him down, get the labs that we need. It's not an enjoyable experience for anybody. But I don't leave those appointments, crying, I just get in, get out, get it done. That's just part of his life. I think the hospitalizations, illnesses, I accept that those are part of his life, we prepare for them unlike in the very beginning. Now, I just know they're coming, I guess. And now I just know, we have our hospital bag packed, I always have a toiletry bag in case we need to stay overnight in the hospital, I feel that over the years, I'm better prepared for things like that to come up. And then when they do, it's not such a hit to my emotional state. It's that, okay, we know, we prepared for this, we know this is coming, it doesn't make it any easier. It just doesn't catch me off guard as it did in the beginning, maybe if I know that things like this are coming. But I think I will... I'll never get used to seeing him hooked up to IVs, and super lethargic and really sick in the hospital. That will always be painful. I mean, just as anybody, right? Any parent that has a child that needs a hospitalization for any reason, it is going to be a source of pain. And that's where it's hard because, you know, you read these things that as parents, we're not allowed to feel certain things in the parenting a child with a disability. But I do feel that, and I need to recognize that. That's the thing. I think that I'm not grieving that Christopher, like we said, can't do a lot of things. I'm not grieving that part. I'm grieving the part that my child could get so sick with a common illness that it could take his life. I will forever be upset about that part.

 

Madeline Cheney  32:59 

Which, like you say, makes so much sense. We're not robots, right? We feel this stuff deeply. And we're not only are we not robots, we're their parents, like we love them. And I think that's kind of what it comes down to like the common thread I see. And both of these like, okay, the disabilities and and like the medical issues is our love for them. Like putting your words in your mouth. I love Christopher. And I love all the different parts of him like that makes him who he is. And I love Christopher and so I hate seeing him in pain or suffering, right? Like, they both come from that same place. I think.

 

Melissa Schlemmer’s  33:32 

Yes. I'm not telling anybody else how to feel. So I can feel what I am feeling. I love him so much. And it's so hard to I think when I don't know what he's understanding, I don't know that he's understanding, okay, I am really sick right now. And this is what needs to be done to me. This is what needs to happen to me in order to get me well. So yeah, we explain everything to him. And we tell him things that this is what's happening. But at the same time, it's very different than if my older son, for instance, would be sick or I can talk him through things. I can hear him tell me he understands me. I can hear him say I don't want to do that. I don't want to do that, this hurts. I can hear all of that from him. But with Christopher I can't hear all of that for him. So that that makes me really sad that there are a lot of things in his life that he has to be put through. And he may not really understand why.

 

Madeline Cheney  34:41 

Yeah, totally. And like I've had the thought to have like, so for my son like we can talk to him and stuff but like thinking of like when he was younger baby so like I also just worried that like when we were the ones holding him down for things like lab drawers or IVs or whatever. Like, please don't associate this with me, please don't think I'm doing this to you. Because there's always that fear of like, I don't want you to see me as the bad guy. But a lot of times in things like that, or like medical cares, you know, when they're like writhing on the ground screaming, and you have to like, hold them down to do these things. It's like, I really hope that you know how hellish this is for me like I have, I have no joy in doing this to you. And I think that's also like a really painful part of it is like the idea that they could associate it with you.

 

Melissa Schlemmer’s  35:26 

Oh, Christopher recently had a virus. I had to bring him into the hospital after calling the on call. They said, now I usually bring him into the emergency department. And just the pain on his face when we pulled into the parking garage, because he knew where he was. And he knew what was about to happen to him. that broke my heart. It broke my heart, because I drove him there. His face, he was so upset that he knew that where we were, and he knew that some things that he didn't want to happen to him were about to happen to him. And I felt so guilty, that I have to bring you here. I have to take you here. This has to happen. And like you said, I'm getting zero joy out of this. This is very painful for me that this is part of your life. But there's no getting around it. There's nothing I can do to make it better. There's nothing I can do to change it.

 

Madeline Cheney  36:28 

Yeah, well, it's like, the things I'm doing to keep you alive and safe and healthy. Because I love you are things that are like, so terrible, and like painful, that goes against all your instincts to do those things. Because you're like, well, I don't want to inflict pain on my child, but like I have to to keep you alive and safe. I feel like it's something that like parents who don't have children with medical complexities just will never understand like, no one else can understand this. That terrible feeling of having to do that.

 

Melissa Schlemmer’s  36:57 

Yeah, sometimes I'm like, Oh, maybe I should have my husband do that.

 

Madeline Cheney  37:02 

Yeah, like let's just split this up a little bit.

 

Melissa Schlemmer’s  37:04 

 This is too painful for me. You go do it.

 

Madeline Cheney  37:06 

Yeah. Yeah. I mean, that's valid. That's totally valid. Well, I would love to wrap up with thinking back about, Melissa, before, you know, you've had like this radical acceptance and you know, shifted, and time has passed, like, what do you wish you could say to your previous self, maybe in those first few years, also keeping in mind listeners right now that are kind of back there in those first few years?

 

Melissa Schlemmer’s  37:32 

I think in the first few years, no matter what I think it is so hard to see past today. I think it is so hard to envision what life is going to be like, even in a month, even in a year, you can't envision that. I remember thinking back to holding my tiny little baby, you can't think about them in a wheelchair going to school, you can't think about them taking their first steps in a gait trainer at age five. I know I couldn't, I could barely see past that moment. I could barely see past that day. And I was probably more hyper focused on what he was incapable of, than what he was capable of. I think, you know, it probably is part of that grief, part of that grief of accepting that your child is not who you planned. Your child is not who you thought that they would be. And then I think over time, and obviously it does not mean you don't love them. Bothers me that we even have to say that, you know, as a parent of a child with a disability. It bothers me so much that I have to almost prove I love him unconditionally, and I accept him.

 

Madeline Cheney  38:50 

Right? Yes. Amen to that. I hate that. Putting that disclaimer in there. By the way, let me just, like reassure you right now how much I love.

 

Melissa Schlemmer’s  38:57 

Right?

 

Madeline Cheney  38:59 

It's the worst.

 

Melissa Schlemmer’s  39:00 

So, it just bothers me so much that I have to like, prove to you that. Yes, he is disabled. And yes, I love him tremendously.

 

Yeah. Anyway. I think in the beginning, I wish I wasn't so defensive. I wish I gave people more benefit of the doubt. I wish I wasn't so hyper focused on who he wasn't. But maybe I did need to agree with all that. And maybe that is why now like you said, I have this radical acceptance of who he is. And I accept every single thing about him and I don't wish he was anybody else.

 

Madeline Cheney  39:42 

I love that. Well, thank you so much, Melissa. I loved our conversation. I'm super excited to share this. I think so many things you said nailed on the head can also give a lot of hope to those of us who are earlier on in our journeys, and I just really appreciate you coming on.

 

Melissa Schlemmer’s  40:01 

Thank you so much for having me. I feel like we could do this every day.

 

Madeline Cheney  40:05 

That would be awesome. Come back to the Madeline and Melissa podcast daily episodes. It would be awesome. Thank you.

 

You can find adorable photos of Melissa, Christopher, and the fam on the website, therarelifepodcast.com. You can also find links to follow her and me on social media, which I totally recommend. Melissa has a super relatable Instagram page. And that's actually how I found her and asked her to be on the show. Her handle is our real rare life, which I feel like just speaks for itself. Also in the show notes is a link to the Napa Center website, Napacenter.org. You will also find a link to the episode I mentioned in our conversation which is episode 77, To Those Who Cannot Say, “I Wouldn’t Have Them Any Other Way." So check that out if you'd like to listen to that one as well. Join us next week for Melissa's special topic episode all about Christopher's siblings and what that's been like for her to raise her disabled son Christopher right alongside two non-disabled children. Melissa's perspective taught me a lot and I cannot wait to share this with you. 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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