Personal fuels mean for these next two episodes, we're focused on disabilities and rare diseases. First, I'm bringing on Madeline Cheney, who is the host of The Rare Life podcast and mom of a sweet kiddo who was born with a rare disease. She's sharing her experience from the moment she found out in pregnancy to where they are today. Then next week, I'm bringing on Sarah Todd Hammer to share her story. She's a three time published author, speaker, and
disability advocate. She has a very unique story and tells her disability experience from a place of vulnerability and honesty. I'm so excited to share both of their stories with you. Also, let's get into it. Joining me today is Madeline Cheeney. You host a podcast called The Rare Life for parents of children with rare conditions, and I'm so excited to talk to you today all about that, your story and everything. So Hi, thanks for joining me.
Thanks so much for having me. I'm so excited to chat, I know.
And I'm really excited to share your story, and I think that's the best place to start. I want to hear why even this podcast exists and the reason for it from your perspective and what's happened in your life to be where you are right now.
Yeah, So it all starts with my son, Kimball. He is right now, he's almost seven, and we have an older daughter, Wendy. So when I got pregnant with Kimball, she was two, and we just thought we just have a run of the mill life with run of the mill kids, not including disabilities, because you don't really think about that. And we had found out at that point I was going in for my twenty week ultrasound, which
is where a lot of these stories start. Going into that, I was like, Oh, it's going to be a super boring appointment. There's we're not really going to learn anything because we had accidentally found out he was a boy at thirteen weeks, and so I was like, we're not going to find out anything. So I told my husband, like, you know what, don't come to the appointment. It'll be boring. Just go to work. So this was the first appointment he didn't go to with me, which in hindsight, I'm like, oh,
I wish he would have been there. But I brought our two year old to that appointment, and as the ultrasound tech was scanning me. I was like, oh, she's being pretty quiet. That's funny. I'm used to like with my daughter. It was a very lighthearted chatting without the baby and are you excited and are you excited to find out if it's a boy or girl? But it was just silent, and I was like wanting to make
small talks. I was like so like asking her about her job, and she was like, normally I work in this high risk clinic downtown, but I come here once a week. And I was like, oh my gosh, that must be such a hard job to deliver hard news to these moms. She was like, it's not my job. The doctor does that. And I was like okay. And I was like laying there and she's pretty hard to get it's hard to get her talking, but she was.
While we were chatting about this, she was measuring and remeasuring different things she was finding on there that were definitely red flags, but she couldn't say anything because she's not the doctor. I'm just laying there thinking everything's fine. And then she was like, Okay, the doctor will look at the ultra sound results and then we'll bring you in to talk to him. I was like, that's weird. Like with her daughter, he just called us a few
days later. I was like, Yep, everything was great and that was that. So I was laying there thinking like, could there be something going on? No, there's nothing wrong, because I think for so many of us that do have disabled children, it's you never really think it's gonna happen to you. You're like, that happens to other people, ohll never get it's not me. So I definitely was in that camp at that point, or I thought I was. And a little bit later they brought us into the
examination room with the doctor. I looked at his face like trying to get a clue, and I was like, oh no, like this is not good because he looked pretty serious and he sat us down, or sat me down. My daughter's toddling around, and he was like, it's hard to know for sure, but we think your son has down syndrome. And I just remember that those words they changed my life forever. It just everything shifted. I felt like the whole world was like teetering on its side.
I was like, what is happening right now? When I sat in a daze while he was explaining the different markers that looked like Down syndrome. For example, he had short limbs and he didn't have a prominent nose bridge. There just really wasn't any There's just like a little tiny nub, which super cute. We have lots of pictures of those. He was like, we're gonna test you and we can find out if he has Down syndrome, and we'll let you know within a week. And we were like.
I took my daughter and we were walking out, and I just remember like feeling just like everything felt so surreal.
And I say, what was your first like he tells you that, and what are your emotions and thoughts going through your head? Because you did go into this being like this is a normal appointment. My husband's not here. Ye, holy crap, I just got really big news.
Yeah. I really just felt like my whole world had flipped upside down. I just felt like, oh, this is so hard, Like this is going to be such a hard life. I think that was really what the first thing that came to my mind was. And I remember as I was processing and it was really like washing over me. For the next few hours. After that appointment, I realizing, oh my gosh, I've been writing letters to
this unborn child, and he'll never read them. So I had these assumptions or the little knowledge that I had about people with Down syndrome. I'm not saying that was accurate or not, but that was what I was thinking of. Oh my gosh, he'll never be able to read these and I will never be empty nesters. That was another thought that immediately came to my mind, of this lifelong care.
We will never just this life that I expected, This trajectory that we felt like we were on was suddenly shifted completely and all I saw and my future really was hardship. I was like, this is gonna be so hard, It's gonna be so much of work, and I'm never going to be done. And I think I'm naturally a pretty independent person, and so the idea of having a child is dependent on you for life was really hard for me to wrap my head around.
Yeah, And I don't think a lot of people consider that, because you're really thinking about these first few moments and just like getting the news and the kind of shock of it all to your point, nobody goes into it expecting that it's going to happen to them, and then they also as they start playing it out on their head, have this thought of, oh, this is a child that will likely need my help for life in one way
or another. Even if they become independent, even if all these things play out, there's still always going to be probably a need for me. And that has to be terrifying in just itself alone, because probably what you were imagining your future after having kids feels like that gets taken away from you.
Yeah, yeah, for sure, there like grieving this whole life I thought we were going to have and I thought he would have and oh there was something that you just said. I think like one of the reasons too that we didn't this wasn't even on our radar, is that we didn't know anyone with a disabled child. Yes, I could, like my brain started bringing up, like, oh, I think didn't this one cousin once say that, like, oh, I think she has a disabled child. But it was
people that I was not close to. So no one in my immediate circles, none of my family members, none of my close friends had disabled children, And so I think that was one reason that I wasn't even you know, it wasn't on my radar at all. But that also meant it was so lonely. I felt suddenly just so alone in this, and I was like, no one understands. I called my mom and I called my siblings, and I was like, I was like, oh, they think he has down syndrome. And the things that they said in
response it wasn't bad. I'm sure I would have said the same thing, but it was just very clear to me if they have no idea what this is like. And again, that was just such a terrifying thought. I was very young too, I was twenty four years old, and so I was just, I don't know, very naive to hard things in life, and so this was really a very rude awakening to like things that can be really difficult in life and complicated.
Okay, and now I'm like placing this and this is just so crazy to me. Are you I'd never ask age, but I'm just like, are you thirty one?
Yeah? I am thirty one.
I'm thirty one, and I'm sitting here and I'm not married, i don't have kids, but holy crap, that's the first thing that comes to my mind. Not only is this happening and this is big news, and yes, you have another child, so it wasn't like this was a okay, we were playing, this is part of the goal, but you were so young for that experience. Yeah, was that
another thing that was going through your head. I'm really young, and I don't think I have the preparation to do what this is going to require of me.
For sure. That was one of my first thoughts. Honestly, it was I'm too young for a child with Down syndrome, because that's what you hear, It's like the advanced maternal age and all of that. I was like, I'm twenty four years old, like this is not supposed to be happening to me right now, which of course it does happen to younger people. But that was like this assumption too that I felt almost this like immunity because I
was so young. And then yeah, I mean there were so many times throughout our son's life too, as after he was born and at with different things that happened that were really hard. I remember thinking like I'm too young for this, Like I'm way too young for this, and I know, life just happens, right, it's not it's indifferent to your age and your experience. But it's interesting because I was talking to my mom about this recently, and she was like, Oh, I had that thought a lot.
She's way too young to have to go through these things. And so I do feel like for being thirty one years old, I relate a lot with people who are older, like I have a lot of my best friends are forties and their fifties, because I think like the life experience that I've had up to this point have made me grow up more than I would have. Undoubtedly I've grown up a lot more than I would have without Kimball, and are experiences with.
Him, Yeah, absolutely, And I could imagine that would just gosh send you on a completely different journey on so many levels. When you go back and you tell your husband this, that first conversation that you guys are having, is he reacting how you expected? What was that conversation like in those first few days moments, He's very even keeled, That's one way I describe him. So he's very much
like the stoic, like stable one, and I'm not. I'm like more of the like passionate, reactive, over dramatic person in our relationship.
And so when I called him, I buckled in. My daughter was shaking hands and as soon as I came out of the office, I was sobbing, and so I, like with trembling fingers, tried to call him as I got into the front seat to tell him this, and when he answered, it took me a little bit to compose myself enough to tell him, and so he kind of sat there, Oh, my gosh, what is she about to say, because he knew I was at this appointment, And I was like, they think that they think that
Kimball has Down syndrome, because at that point we'd already named him, we already knew he was a boy and everything. We were really connected to him. And he was like, oh, I thought you were going to tell me that you had a miscarriage, because that was what was going through his head hearing me sobbing like this. And then I said something that I feel a lot of shame about now, but I have also a lot of self compassion for what I was going through at that point. But I
said to him, that would have been easier. And I think at that point I was thinking about if we had lost him, I would go through the grief and it would be really traumatic and hard, and then we would move forward, which in hindsight, now, I don't think that's how. It would not have been that simple. It'd have been a huge loss. I was already twenty weeks at this point, But that's what that's how I viewed it.
Like we would grieve it, we'd be really upset, and then we'd have another child, and then that child to be like quote unquote normal whatever that means, and then independent and all the things. But this life that we have with our son Kimball is going to be so difficult and it's going to be again this lifelong thing. And at least that's how I was perceiving at that point. And yeah, I think he felt relief that wasn't that we didn't lose him, and then he remained like this
the stable one in our relationship. And it's really interesting. We've talked about it since about and with several other dads too. We actually did a whole episode about the kind of the dad perspective and how that's different than the mom's when you have disabled and medically complex children,
and it was pretty unanimous among them. You feel like you have to be the strong one because of cultural and societal norms of I have to keep things together, I need to make sure the mom's okay and the baby's okay, and so really shoving down their own feelings and emotions and not feeling safe enough to struggle. I felt like I could struggle. I had all the permission to struggle, and I don't think he had that same safety And I feel sad about that now.
Well. And it's true though, because in the very beginning stages from all of my mom friends, I've heard you have this just this such emotional connection because you're growing a human inside of you, and it's a different experience than the men are already having, So I could imagine that experience would stay that way, especially given a state like this. So that makes sense, like in my brain
at least of the experiences that people have. But it's also not fair, right, because dads also deserve to have those emotions and feelings about a very life altering moment. But and it hurts you in a way that they feel like they have to be that way. So I'm happy that you were giving them the space to show that. So hopefully future dads in the situation can feel something for that and not feel like they have to be strong,
because I think at least. I would imagine for both of you guys, it would take both of you to be strong, not just one of you.
Yeah, for sure, I think it would have been a lot healthier than it wouldn't have been. Oh, I'm the one who freaks out and processes everything really messy, and you just are it's there, it's all bottled up inside. Right. It's not like they aren't experience those emotions as just they can't fully if you don't feel like you're allowed to.
I want to know now to So this happens, this conversation happens, and obviously you have him and life is changed. So did he end up having what they expected or was it something else? What happened as that course changed? Because also they're predicting this and based on numbers and what they're seeing on sonograms, and I know that can change as they're born and other things developed. So what happened after he was born?
Actually it was a week later after this ultrasound that the test results came back negative for Down syndrome. And so I think this really set the precedents too of a life just full of roller coasters, and really that's I think that's one thing that you've just surrendered to once you get used to one idea and then all of a sudden it's a whole different thing, and just being like, you know what, this is how it's going
to be from here on out. And that really was the case for us for the first few years of his life too. But we because it came back negative, the doctor was like, it's probably something very rare because it tested for like the twelve or twenty round whatever number it is most common abnormalities, you know, in birth.
And at that point we were launched into the world of rare and that was really scary to be like, Okay, like I first, I got launched into this like mini community subset of people, or like the down syndrome community, or there are actually a lot of like within the world of disability that's a very prevalent, robust community. And so then to suddenly be like, oh, actually you don't
belong here. You're gonna we're gonna shuffle you out into this other corner that's even more isolated from culture and your friends and everyone around you. And during the course of the next few months of pregnancy with him, we had lots and lots of ultra sounds. So I got a lot of baby pictures of him, which was one perk. But they were like, we think he has this really rare condition. It's called condor displaysia punk Tata xling type one, which is just a little general.
Because you're like, okay, so what does that mean exactly?
And if you translate the word over directly, one of the things is that it says people with this syndrome they have polka dots in their joints, which is what you can see in ultrasound. It doesn't really affect them like functionally, but that was one way they're like, oh, this is a marker for the syndrome, and then he's
checking all these other boxes. And so that diagnosis ended up being confirmed after he was born, and so we learned that there were one hundred and twenty five other people in the world with confirmed cases of this, and so ultra rare, very little ever in the year or I think ever documented. Wow, And so yeah, and we've learned later too, because it's with these rare diseases you
find out more. In the best cases, you learn more and more as time goes on, and we've learned recently with new research that's come up that oftentimes these babies die before they're born due to brain bleeds that often are not caught before birth, and he luckily did not have that symptom, and that's why he was born alive.
But we knew that there was a high chance of them of him passing away before birth, and so that was also this whole other layer where before it was like, oh, disabilities, that's really hard and that's different, and it has the stigma and I'm not sure how to help him and get all the support we need and it'll be so much work for me. But then and oftentimes I do have heart abnormalities and that's scary too. But it really wasn't the medical side really wasn't a part of this yet.
And then when we got that diagnosis, it was like, oh, we are going to help this child fight for his life. That's what this is. And so we immediately had very specialists that were meeting with us and talking about the different interventions they would do once he was born and
what it would likely be like. And they were told us we had to deliver at the specific hospital because it had the highest level nik you that was most likely to help him survive, and so it just really and again like I just felt, I was like, I'm so young. I'm so young to be dealing with this stuff like this is so scary something you never think you're going to be facing in your life.
Yeah, you're getting all of this information, which I would think is very overwhelming because you don't understand any of it. You're going to specialists, You're probably dealing with a lot of medical bills that you weren't prepared for in the first place. You are being talked to about something that you're growing inside of you that may not make it, but if it does, it may not make it later.
And you're sitting here just having so many variations. You mentioned the roller coaster, but Madeline, this might be the bumpiest, like the roller coaster that doesn't have any screws, is what it feels like the way that you're describing it. And to be two people who are experiencing that along with already having a child that you're supposed to be
loving and caring for. I just I want to recognize how much strength all of you have to have went through that, just the emotional turmoil that you probably went through throughout the entire beginning until you the reward of having him in your life. It was like you had to emotionally go through so much just to get there.
Yeah. Yeah, looking back at it, I'm like, oh yeah, like I can see where, like you do, you need a lot of resilience to get through things like that. But I think at the time it just felt like being beaten to a bloody pulp of I can't handle this, I can't handle this, and just thing after thing that
was so beyond my capacity, because it really was. But then hindsight's twenty twenty, and I can be like, okay, that that was so incredibly painful, But I also can recognize qualities that I have now that I wouldn't have been able to get any other way. And so I think in that way it helps me. That's actually helped a lot with healing passed a lot of those traumatic
experiences as recognizing the good that's come from it. As cliche as that sounds, and I think that takes a lot of distance and stability to be able to see that for what it is later, But I think that's helped me come to terms with that time because honestly, like thinking about that time it gets by heart rate going. I'm like, oh, I just I feel for that version of myself because it was so scary and so dark, And I just remember this one conversation we had, which
was probably the lowest point that we were emotionally. It was I think it was like probably a month before he was to be born, and we met with the palliative care team, a pediatric palliative care team, and they basically were talking about it, talking to us about like quality of life and how our lives were about to change dramatically, and how we should make sure we had a plan so that our daughter could be rushed to the hospital things were looking like he wouldn't make it
so she could meet him, and she's just toddling around in the back of this room while we're talking about these like horrible, harrowing things. I remember laying in bed because I don't think any of the doctors had really talked to us about the possibility of him dying, right. It was so much of here's how we're going to help him survive. Here's what we're gonna do, here's the plan. This was the first time we had anyone in the medical world sitting us down okay, but let's talk about
what happens if he doesn't make it. And so I remember going home from that and just laying in bed with the blinds drawn and just unable to get up. I was like, this is so scary, and at the time it was interesting. I had a no sorry, let me resay that. A few months later, after Kimball was born, a friend of mine had a baby that passed away right before he was born, because we were pregnant at the same time and they were due like three weeks apart.
And I just remember watching them go through this and still now when I see them talk about it, and just the way that it completely shattered their lives and their hearts, and I sho remember thinking like, I don't understand what they're going through, but I feel like I can empathize better than most people can who haven't actually had this happen to them, because it was like they were in this dark alleyway and I had peered around the corner and I had like really grappled with what
it would be like to be in that alleyway. I'd really thought, what is this going to be like if our son passes away? And so because of that I feel like, I don't know, it was like teetering on those two worlds, right between those worlds of child loss and then having a medically complex child. And I'm grateful every day that we ended up not going down the proverbial alleyway and instead have a medically complex child. But it, yeah, it was a very dark time.
Yeah. Wow, I'm just I'm like, truly, it is a beautiful resilience that you guys have, and I don't know that anybody can never understand what that experience was like for you guys, either of you guys, your friend or for you and it's so individualized that even hearing you talk about it, like, there's just no there's no way I can truly grasp those emotions that you were experiencing in that moment. But I do appreciate you sharing them because somebody out there will need to hear it and
we'll have had similar experiences and need that. And if I remember correctly, based on your some of your social media content I was watching, he had quite a few things that he had to do when he was first born, and he did make it, and he had to have stuff happening all around him for a lot of that time period, and I'm not sure how long, but I'm curious what that experience is like, because you get excited he's here, he was born, yay, but also what's about to happen now?
Yeah, I mean it was interesting that dynamic, because You're right, it was this. When I gave birth to him, it was this huge flurry. I was induce so our special doctor could be there and this whole team would be ready, and then all of a sudden, he just like came like way faster than they thought, so she never even made it there. I mean, like the room was completely full. They were like, everyone get in here now because this
really like fragile baby's about to be born. And so the room was just full of commotion, and they delivered him and then whisked him out of this like little window they had that connected to the nicicu and then it was completely empty, and I was just sitting there by myself, and I just remember being like, oh my gosh, like I did it and he was born alive. And I think at that point too, I was like I
got this all done. Because childbirth is intense, like in and of itself, right, that's like its own whole thing. So I was like, yeah, I'm maud of myself.
You're mentioning that you had a room full of people, and You're like, I am very vulnerable and I'm about to have this huge moment in my life and then it's just everybody's gone. I like the juxposition of that experience alone.
Yeah, it was. Yeah, it was crazy. And I think it was interesting because I with my daughter, I had the experience of delivering her and then they placed her on my chest and then I just have this bonding moment, and I knew I wouldn't have that with Kimball, and so I think that was actually really helpful to know
that ahead of time. I've talked to their parents who didn't know, like they had no idea anything was wrong with their baby, and then they were born and then whisked away, and I think that's far more traumatic in that way. But I had the knowledge beforehand that there's no way he will get whisked off, so they can stabilize him. And I remember laying there being like, how I'm feeling pretty good. I delivered him. He was alive,
Like they're stabilizing him. My husband's there with him, and and so the moment of not being able to hold him, I think felt I don't see what's the right word. It didn't feel funny, but it felt almost Wow, this is a really weird experience. They took the baby out. He's gone, and then my husband came in and showed me a picture of him. That's how I saw him for the first time, because they held him up really briefly and then whisked him away, so I didn't really
see him at first. So he showed me this picture of this adorable fat baby. Completely he was sedated, like they had to give him extra doses of sedation to be able to intubate him, and so they were shoving the breathing tubes down into his lungs and I guess he had been pulling them out and so they had to sedate him. And so I saw this like adorable splade baby, and I was like, oh, my gosh, there
he is. There's Kimball. And so I think it was just it was a very humanizing moment to be like, he's a real human baby and he is mine and I'm his mom. And I felt so proud of us, like forgetting this far. And they wheeled me back to see him, and so I was like, because I had just had him, and so I was in a wheelchair and it brought me back to the nicky to see him, and there was this beautiful baby and I was like,
he's mine. I don't know. It was interesting how it's like there's this almost detachment because he wasn't just laid on my chest. It wasn't like on now, I'm never parted with him like it was with my daughter, because he was like being taken care of by other people. It almost felt like this little every morning when we would go once I was discharged and we'd come visit him in the nicke, you it felt like Christmas morning. Like every morning it was like, oh, there he is,
there's my son. And it was just such an interesting experience and it was very painful to leave him there, but at the same time, it was a very unique feeling of joy to go there and to feel so proud of this baby that was mine and so you brought him.
Into the world, so I could see how that like, he is mine, but also I don't have him yet, and you're used to the experience that you had with your daughter, so vastly different.
Yeah, It was messy, for sure. It was so there were those intense emotions of joy and like pride over him, Look, we did it, he's here, and being so grateful that he was there safely, as well as obviously a lot of anxiety about will he stay okay, And we weren't able to hold him for the first I think it was on day like nine we were able to hold him because he had this as part of a syndrome.
His cervical spine was not hardened the bones, the vertebrae there and on the C one and C two level, so it's a very like catastrophic catastrophic area to not be stable to protect his cervical spine, and so if he put his chin down to his chest he could be paralyzed or die. And so it was like they actually kept him sedated the first week too, so we didn't see his eyes, we didn't know what color his eyes were yet, to keep him from moving around too
much and injuring himself. So I think just things like that was just it was so vastly different than your typical baby experience, and so there was a lot of anxiety there. There was also like that longing to hold him. At first, I was like just so proud of the picture we had and being able to see him, But then I felt angry. I was like, I want to be able to hold my baby. I can't even hold him. I can just touch him while he's on this bed
other people are taking care of him. It was such a detached parenting experience, and I knew what it was supposed to be. Like, I was like, I'm not a first time mom, Like I'm watching these strangers like change his diaper. And they allowed us to do what they called his cares, which is changing diapers and like switching around his little like pull socks on his foot and things like that. And they were like, oh, you can do some of the cares if you want to, like
help you like bond with your baby and stuff. And so I remember changing his diaper and it was a wet diaper and I was like, should I like wipe him if it's just pete? And I was like, what is happening right now? Why am I asking a nurse if I should wipe my baby's bum? I am a mom, Like I already know all this stuff. It just felt so weird to feel like I had to ask permission for everything when I already was I already was an established mom at this point.
That experience just being in there, and you feel a little helpless too, I would think, because you are asking someone, but also you can't do all the things that you know you're capable of doing, but it's like you're not allowed to until given that space. So how long was he in the nick U four He was.
There for twenty two days, which felt so long to me at the time, But we also watched another little resident there have her first birthday there and she had not gone home yet, So I think I also felt the gravity of I'm so grateful that he didn't have to stay here very long, and I'm so grateful he's coming home because we didn't know if we would take him home, and there was a moment where he had just come out of surgery and things were looking dicey, and so being able to bring him home was again
it was like bringing home this little like this ultimate Christmas present of our baby's coming home now, which again it was Yeah, it's just so surreal the way it happened.
Yeah. So then the years that follow and he's now seven. In those years, like what has been the medical responsibility for you guys. Been like, as he does grow up and he becomes his own little human and gets into all the fun years and you guys get to do stuff with him. What is that other side, though, the care that goes into making sure he's allowed to have those experiences.
So in the first few years, the biggest the biggest hurdle was his neck, right making sure he didn't because babies and kids, like, they fall over, they roll over like they're doing a lot, and having this thing hanging over us of oh, but he can't fall or he'll break his neck and maybe die or be paralyzed was just this really heavy, ominous thing. So we have these big cervical spine collars, like kind of like the ones
you see when people break their neck. He had that on from day seven or whatever day it was that they made it for him, and so that was a big part of his care. We also had a rollercoaster with that where there was one appointment they were like, oh, actually it's all hardened. It's great, You're good to go. You don't need this anymore. You don't need this big invasive surgery to fix it like we thought you would.
And we were like on cloud nine bringing him home without this and finally being able to hold him without this brace. And then three months later at the follow up, they were like, no way, Like the other doctor was completely wrong. This is so dangerous. And to realize that whole time, he could have died anytime during that point or any point during that time. Yeah, so that was
really scary. And so again that roller coaster of going up and down, and then later it did harden and so he never ended up needing this huge surgery and he didn't need the color anymore. So that was a huge relief. And that was like, like, over the years medically he's stabilized to where he is now, and so just one thing at a time was dropped off the plate of medical care. So that was one huge one.
He also had a feeding tube for the first few years, and so once he weaned off of that, that was incredible. Although it was so cute because his perspective of his disabilities is very different than ours, Like he's always been so proud and which I love, but like when we removed his he had a g twobe button and so that just goes right into his stomach and so you were able to feed him that way. And so the day we removed that little button that went into his stomach,
he was so upset. We had ice cream ready, we were gonna have this big party, and he just laid on the floor with his special blanket like crying. I was like, oh, my gosh, he's really sad. And he used to play with his little button when he was nervous or like sad. So I realized, like, we just removed a body part of his basically to him, like
he never remembers not having it. It's been very interesting to see the difference in how he feels about that type of thing to compared to how we feel because we're like, oh, you shouldn't have needed that in the first place. I'm so sorry this happened to you. And for him, where'd my button go?
Like?
I really liked playing with that. Yeah, So that's been really interesting.
The kid's perspective is so cool. They don't see it as anything other than just them. This is who I am, this is how I was born. And it's cool to hear that was the experience because I I bet that allowed you guys to have even more perspective of him, thinking he probably felt all the things that you guys were feeling, and he was born and all of this emotional experience that you guys went through of this is what his life is going to be like and he was just born. I was like, this is just me.
Yeah, yeah, for sure. He also is. Part of his diagnosis is deaf blind, which means he just has that dual loss of visual impairment and hearing loss. So in the first little bit when he was a baby, he was profoundly deaf and profoundly blind, and so I just remember that same type of thing of projecting how I
would feel. I love being like, what would it be like to only have light perception at like bright windows and to have these squeaky little hearing aids that are like sound completely different and he really can't hear that well with these either, Like that was something that I felt so distraught about. But he has now his vision has improved from what it used to be, and so he's pretty functional with it. But even like he can't he will often not see things that are clearly there,
and he's just happy to be here. And it's just it's very interesting to see how it doesn't phaze him because he doesn't know any different. I think sometimes his parents that's a really sad thought of, Oh, he doesn't know any different, But he doesn't know any different, and so I think really coming to terms with that has really helped too, and how I view his disabilities. So he's fine with this. And he does have dwarfism, so
he's very tiny. He looks like a three year old even though he's almost seven, and sometimes he'll be like, oh, I want to be tall. But other than that, he just struts right into school. I'm super confident and proud of himself and all the parts of him. And so that's been something I wish I could have shown myself in those first few weeks after finding out that he would be disabled, to be like, but look like, look at this adorable child that's alive and medically stable and
embraces himself with all of his disabilities. And the I think one of the hard parts of this is that's not the case for a lot of parents, right that it doesn't often happen where they stabilize medically and then everything's like you're just assisting them with their disabilities, but everything's okay. I think for a lot of parents and especially the ones I talk to their child's diseases progress
until they pass away before adulthood. And that is the really heavy hard side of this is that my story is not the story for many parents, and I'm very
aware of that. And so you asked at the beginning why I started the podcast that I did, and it really goes it's those are the parents that I really aim to serve, or the parents who, first of all, the ones that are experiencing things the way I did in those dark early days, as well as the parents who stay in those dark days, right, the ones who don't have the happy ending with the flowers and the confident child and all those things, The parents who will
lose that child, the one that they've grown to love so much, and it's just such an isolating experience. And I think community is something that can be so empowering and so healing. So that drives everything that we do to try to help create that community. And there's already there are so many parents doing similar things. I'm not the only one creating that community, but I think every effort there is so important.
And to your point, because there are rare conditions, these are things that are isolating and feel very lonely. So anything anybody can do to help, just provide a space where people can feel seen and connected to is the best thing. That was the purpose of my podcast was doing that, just in a broader sense, not as niche. So I love what you're doing. I think it's incredible.
It's how I found you when I was trying to find someone to share their story and be willing to because it's also hard to share a story like this and have so many experiences that you've had and be like, yeah, let me keep reliving them or let me keep talking about them. That's not an easy thing to do. So I love what you're doing and I think it's awesome. And you do mention your daughter. You have two kids. What is it like the experience for you now parenting kids that have differences.
At the beginning, it was so hard and scary because our daughter Wendy was really struggling while I was struggling. I think it had more to do with me struggling than it did her brother struggling. At the time, I think that instability has a stay at home mom before that and everything, so like we were together all the time, and so I think that me having a hard time emotionally therefore translated over to her, and I felt like I was drowning and she was drowning too next to me.
But there was nothing I could do because I was also drowning, and so that was incredibly painful. But as Kimball has stabilized over the years and I've also stabilized, it's become just part of our family, just the way
our family is. We talk about Kimball's we make jokes about his hearing aims, or oh, he totally misheard me, or sometimes he'll walk into a room that I'm sitting in, like mom, and scan the room and then walk out and look in all the other rooms and then I'll bet kim Mo'm in here, and then he walks and he's like, that was magic. Yep, Kimball, that was magic.
That's incredible, you disappeared here. So just little things like the Wendy and her dad and I can have little jokes about because funny little things like that happen related to his disabilities. And I think we're also going to test her for autism, because that's one thing that we've been curious about, especially with the way that she really struggled in the beginning with that change. And so when I first talked about this with her, Hey, Wendy, I
think you might be autistic. And this is something too that I've become so much more open to and neutral about because of being exposed to disabled individuals and autistic adults, and so for me, there wasn't that stigma that I think there is for some people. And so I was like, you know, like, Wendy, I think you might be autistic. And I was like, it's a different type of disability, and she was like, oh my gosh, I might be
disabled like Kimble, and she was just thrilled. So I think that's something that I have felt has been such a strength to her, is being able to have that perspective and right from the get go that I didn't have as an adult when I was pregnant with Kimball. That was like the world was ending to me, even just the disability side of it. And for her, she was just thrilled to think that she might be in this club of being a disabled person, and I think
that has made me very proud of her. And then there's also this experience that we had recently where so I'm a carrier for our son's condition. So I passed it to him, passed it to him unknowingly, I have a fifty to fifty chance of passing it on to children. Boys are the only ones who manifested. This is all the genetics stuff that I forgot from high school and I had to relearn as it really impacted my real life.
But so our daughter Wendy had a fifty chance of being a carrier for this as well and having the same from what I a similar experiences I've had having children, and so that was this really intense thing. And she decided she wanted to be tested when she's nine years old right now, so that look down upon. We had to push back against the geneticis being like, that's too young. She should wait till she's about to find about to have children if she chooses to. But she wanted to know.
She was like, I want to know if I'm a carrier or not. And so we walked this path with her.
This is just so recent, which the last couple of months, and it was very emotional, is a very heavy thing to watch her going through, but she handled it with so much self compassion and self awareness, and I was so proud of her, and so we later found out she came back negative for it, which was a huge celebration, But throughout the whole process, I was like, she's had to grow up faster than her peers in this type of this heaviness that she's had in her life, and
to be able to see the benefits that has also caused her. Like I was talking about the beginning of seeing the hard things that we've been through and to be like, oh, I can see the benefits that's had in my life in different qualities I have now And so it's been really cool to see a version of that in our daughter because these children, the siblings, are
going along the ride. They're not the parents and they're not the disabled person, but they're going along in their own unique perspective with the same just that we are. And so that has made me feel very proud of her.
Wow, it, Madeline, it sounds like your kids are just being raised with so much love. That's what comes through
in your stories and what you're talking about. And I know sometimes it's hard as a parent, like bigger picture to you see them and you're proud of them, but to also know your role in your husband's role, and because that doesn't just happen like we are how we were raised and what's around us, and your daughter and your son just sound so full of life and so just ready to take on anything that comes at them, and I think it's really awesome.
Thank you so much.
Yeah, And before we start to get towards the end of this, I want to acknowledge too, like you're a human, your husband's a human. You guys were experiencing these things. How were you also making sure to show up for yourselves and take care of yourselves while all of this stuff started happening in your life? And just over the course of this entire.
Experience, I the sense the community aspect has become a huge part of processing and healing for me. But during the thick of it, I had no idea how to find people who understood. So I really was going through
a lot of this completely alone. As far as people who understood what we were going through, we had family and friends that were very supportive, But in those first few years before I found that community, I just held on as tired as I could to a self care routine I had before we had Kimball, and that was a class called Zoomba. It's a group fitness class, yeah, where you danced together with other men and women and
that's your exercise. And so that was something that I religiously kept continued doing while I was pregnant with Kimball and while all the stuff was happening, and then after he was born, and I remember so my husband was very supportive and like I was a stay at home mom, so he'd come home and then I'd hand the baton
off to him and go off to my class. And there were a couple of weeks where I had to miss and I both times, I like had a complete meltdown and we were like, that's funny, that's the week I didn't go to Zoomba. So at that point we're like non negotiable, like I have to go. And it was twice a week, so it wasn't like as an everyday thing, but that I think that was just enough space for me to feel like myself, because as you go through these experiences, you do change in like every
way possible. It really does feel like your previous self is almost unrecognizable. So I think having something that was like this aspect that I had before and then the during and then the after felt very grounding to me and very familiar to me. And not only that, but the researched benefits of exercise and actually found out recently they said that for stress reduction, dancing is the most preferred form of exercise, and I was like, there, you
got it too. Yeah, So I do think it's something that's so light and silly in the midst of stuff that was so heavy and dark. And I actually remember being in class sometimes when we had an extra aggressive song. I don't know how else to describe it, but when you're like, ah, you're like pounding your feet or whatever it is, and I remember tearing up. I don't think
I was like falling. I wasn't sobbing, but I was like crying as I was doing that because it just felt so good to almost like releasing the anger through this exercise. Too. Of we found out this news and just processing it while I was sitting there like just dancing along with my peers and sorry. And then recently
I went back to that class I had. There was a couple of years where we didn't I didn't go to that one class specifically with that teacher, and then I went back again and I was like, oh, this feels like going back to my therapist because it has brought back so many of those emotions that I processed while being in this zumba class, and anyway, that has
been something that's been really helpful to me. But if anyone's listening and also they want some kind of tool to help themselves through things like this, I would recommend something like their version of zumba. Right, it doesn't need to be Zoomba, but something that maybe they enjoyed or helped them find lease or connection or whatever it is made them feel good in some way previous to this happening, and then to see if there's a version of that
you can keep doing. If you can't do that exactly the exact thing, because I think that was like the perfect combination to help me feel okay during all of this.
I love that you had that outlet, and it being zoomba just makes it all the more better because working out is so good for you. But something about you doing zoomba and just having all these experiences, it just makes me smile to think, like, that was your outlet.
I love that, and no one there had any idea, right, They're just like I'm just here zoom, and I'm like, oh, I'm processing trauma and all the things.
Like I gotta stop my foot really hard, and don't pity me.
Okay, let me scream for a second.
Yes, I'm really glad you had the outlet, and I'm glad you were able to take care of yourself, and not only that you had a partner who is supportive in that, because that is also a battle in itself.
So just really awesome. I always like to end episodes and I think I could talk to you for because what you're doing in your podcast is so important, but beyond that, your experience in life and just crazy sitting here and we're both thirty one years old and just vastly different life experiences, which I think is so cool.
I love that this is a beautiful life that you've had, and I just I love that, Like I'm sitting here and I could genuinely sit here and talk forever, but we won't because we've got plenty of things to do. So what I like to end episodes with is whether it's a piece of advice, maybe it's inspiration, maybe it's a topic that we didn't get to and you're really heavy on your heart, whatever it may be. I give the floor to you and we close out our episode that way, so the floor is yours.
I think one thing that I've learned throughout my experience with my son and throughout life in general with other hard things, is really what I've built the podcast on as well, is the importance of talking about or at least naming your own feelings and removing the shame from them. I think a lot of people feel a lot it's pretty cringey to be like, oh, it was the worst possible news I could receive that he would be disabled.
That doesn't sound good, but it doesn't feel that great either, especially as a parent, And we were like, I love this child, and I had these feelings that were so dark, and I feel shameful about it. But I think it is so key to be able to talk about it with a trusted person, to write it out, to allow yourself to acknowledge those emotions, on those feelings, and to
realize that those are very normal. I would venture to guess any kind of emotion or feeling that a parent has around their child with the disability or medical complexity, it has been There's no feeling that's not been felt by someone else before. And I think once you shine a light on those emotions by sharing with others or writing it down or just accepting it in some way, I think it makes it so it isn't in this dark,
scary spot anymore. It has light on it, and it's like, you know what it is, what it is, this is this is how I experienced it, and that's okay. And so I would hope that for people that they would have a safe space to be able to express those things, or at least be able to see other people expressing them.
That's one thing that again I have found to be really powerful, like with the podcast and then other ways of sharing other people talking on social media, is the power of hearing someone else talk about their story or write about it, and then to see things that you resonate with and to be like, oh, I'm not alone, and almost like seeing someone else express that can feel a kin to you expressing it and be like that feels really good to have words put to that shameful emotion.
And so I would encourage parents and anyone going through something hard to find that space and the space internally to really sit with those emotions and to show a little self compassion for where you are.
Yes, that was a great way for us to end. It reminds me of something I always yell at myself sometimes when I live in my shame where I don't allow myself to feel things. I'm like, feel your feelings. I just yell at myself in the mirror. I'm like, just feel it and it'll be okay. So that feels like an appropriate moment for this dude to yell at yourself in the mirror and be like, feel your feelings. Yes, for sure, Oh Madamin, thank you for joining me, Thanks
for sharing your story and doing what you do. You guys can check out her podcast, The Rare Life, and I'll be sure to put her social media and stuff and here so you can follow her and reach out to her too. But thank you for your time, thanks for being here, and I really love what you're doing.
Thank you so much. Has been such an honor.
I'm so happy you're here each week listening to these stories and hopefully healing on your own journey by way of hearing others' potentially shared experiences. That's what this whole podcast is about. Be sure to subscribe and give the podcast five Stars I Love y'all. Talk to you next week with Sarah Todd Hammer