Speaker 1: Personal fuels mean for these next two episodes, we're focused
Speaker 1: on disabilities and rare diseases. First, I'm bringing on Madeline Cheney,
Speaker 1: who is the host of The Rare Life podcast and
Speaker 1: mom of a sweet kiddo who was born with a
Speaker 1: rare disease. She's sharing her experience from the moment she
Speaker 1: found out in pregnancy to where they are today. Then
Speaker 1: next week, I'm bringing on Sarah Todd Hammer to share
Speaker 1: her story. She's a three time published author, speaker, and
Speaker 1: disability advocate. She has a very unique story and tells
Speaker 1: her disability experience from a place of vulnerability and honesty.
Speaker 1: I'm so excited to share both of their stories with you. Also,
Speaker 1: let's get into it. Joining me today is Madeline Cheeney.
Speaker 1: You host a podcast called The Rare Life for parents
Speaker 1: of children with rare conditions, and I'm so excited to
Speaker 1: talk to you today all about that, your story and everything.
Speaker 1: So Hi, thanks for joining me.
Speaker 2: Thanks so much for having me. I'm so excited to chat,
Speaker 2: I know.
Speaker 1: And I'm really excited to share your story, and I
Speaker 1: think that's the best place to start. I want to
Speaker 1: hear why even this podcast exists and the reason for
Speaker 1: it from your perspective and what's happened in your life
Speaker 1: to be where you are right now.
Speaker 2: Yeah, So it all starts with my son, Kimball. He
Speaker 2: is right now, he's almost seven, and we have an
Speaker 2: older daughter, Wendy. So when I got pregnant with Kimball,
Speaker 2: she was two, and we just thought we just have
Speaker 2: a run of the mill life with run of the
Speaker 2: mill kids, not including disabilities, because you don't really think
Speaker 2: about that. And we had found out at that point
Speaker 2: I was going in for my twenty week ultrasound, which
Speaker 2: is where a lot of these stories start. Going into that,
Speaker 2: I was like, Oh, it's going to be a super
Speaker 2: boring appointment. There's we're not really going to learn anything
Speaker 2: because we had accidentally found out he was a boy
Speaker 2: at thirteen weeks, and so I was like, we're not
Speaker 2: going to find out anything. So I told my husband, like,
Speaker 2: you know what, don't come to the appointment. It'll be boring.
Speaker 2: Just go to work. So this was the first appointment
Speaker 2: he didn't go to with me, which in hindsight, I'm like, oh,
Speaker 2: I wish he would have been there. But I brought
Speaker 2: our two year old to that appointment, and as the
Speaker 2: ultrasound tech was scanning me. I was like, oh, she's
Speaker 2: being pretty quiet. That's funny. I'm used to like with
Speaker 2: my daughter. It was a very lighthearted chatting without the
Speaker 2: baby and are you excited and are you excited to
Speaker 2: find out if it's a boy or girl? But it
Speaker 2: was just silent, and I was like wanting to make
Speaker 2: small talks. I was like so like asking her about
Speaker 2: her job, and she was like, normally I work in
Speaker 2: this high risk clinic downtown, but I come here once
Speaker 2: a week. And I was like, oh my gosh, that
Speaker 2: must be such a hard job to deliver hard news
Speaker 2: to these moms. She was like, it's not my job.
Speaker 2: The doctor does that. And I was like okay. And
Speaker 2: I was like laying there and she's pretty hard to
Speaker 2: get it's hard to get her talking, but she was.
Speaker 2: While we were chatting about this, she was measuring and
Speaker 2: remeasuring different things she was finding on there that were
Speaker 2: definitely red flags, but she couldn't say anything because she's
Speaker 2: not the doctor. I'm just laying there thinking everything's fine.
Speaker 2: And then she was like, Okay, the doctor will look
Speaker 2: at the ultra sound results and then we'll bring you
Speaker 2: in to talk to him. I was like, that's weird.
Speaker 2: Like with her daughter, he just called us a few
Speaker 2: days later. I was like, Yep, everything was great and
Speaker 2: that was that. So I was laying there thinking like,
Speaker 2: could there be something going on? No, there's nothing wrong,
Speaker 2: because I think for so many of us that do
Speaker 2: have disabled children, it's you never really think it's gonna
Speaker 2: happen to you. You're like, that happens to other people,
Speaker 2: ohll never get it's not me. So I definitely was
Speaker 2: in that camp at that point, or I thought I was.
Speaker 2: And a little bit later they brought us into the
Speaker 2: examination room with the doctor. I looked at his face
Speaker 2: like trying to get a clue, and I was like,
Speaker 2: oh no, like this is not good because he looked
Speaker 2: pretty serious and he sat us down, or sat me down.
Speaker 2: My daughter's toddling around, and he was like, it's hard
Speaker 2: to know for sure, but we think your son has
Speaker 2: down syndrome. And I just remember that those words they
Speaker 2: changed my life forever. It just everything shifted. I felt
Speaker 2: like the whole world was like teetering on its side.
Speaker 2: I was like, what is happening right now? When I
Speaker 2: sat in a daze while he was explaining the different
Speaker 2: markers that looked like Down syndrome. For example, he had
Speaker 2: short limbs and he didn't have a prominent nose bridge.
Speaker 2: There just really wasn't any There's just like a little
Speaker 2: tiny nub, which super cute. We have lots of pictures
Speaker 2: of those. He was like, we're gonna test you and
Speaker 2: we can find out if he has Down syndrome, and
Speaker 2: we'll let you know within a week. And we were like.
Speaker 2: I took my daughter and we were walking out, and
Speaker 2: I just remember like feeling just like everything felt so surreal.
Speaker 1: And I say, what was your first like he tells
Speaker 1: you that, and what are your emotions and thoughts going
Speaker 1: through your head? Because you did go into this being
Speaker 1: like this is a normal appointment. My husband's not here. Ye,
Speaker 1: holy crap, I just got really big news.
Speaker 2: Yeah. I really just felt like my whole world had
Speaker 2: flipped upside down. I just felt like, oh, this is
Speaker 2: so hard, Like this is going to be such a
Speaker 2: hard life. I think that was really what the first
Speaker 2: thing that came to my mind was. And I remember
Speaker 2: as I was processing and it was really like washing
Speaker 2: over me. For the next few hours. After that appointment,
Speaker 2: I realizing, oh my gosh, I've been writing letters to
Speaker 2: this unborn child, and he'll never read them. So I
Speaker 2: had these assumptions or the little knowledge that I had
Speaker 2: about people with Down syndrome. I'm not saying that was
Speaker 2: accurate or not, but that was what I was thinking of.
Speaker 2: Oh my gosh, he'll never be able to read these
Speaker 2: and I will never be empty nesters. That was another
Speaker 2: thought that immediately came to my mind, of this lifelong care.
Speaker 2: We will never just this life that I expected, This
Speaker 2: trajectory that we felt like we were on was suddenly
Speaker 2: shifted completely and all I saw and my future really
Speaker 2: was hardship. I was like, this is gonna be so hard,
Speaker 2: It's gonna be so much of work, and I'm never
Speaker 2: going to be done. And I think I'm naturally a
Speaker 2: pretty independent person, and so the idea of having a
Speaker 2: child is dependent on you for life was really hard
Speaker 2: for me to wrap my head around.
Speaker 1: Yeah, And I don't think a lot of people consider that,
Speaker 1: because you're really thinking about these first few moments and
Speaker 1: just like getting the news and the kind of shock
Speaker 1: of it all to your point, nobody goes into it
Speaker 1: expecting that it's going to happen to them, and then
Speaker 1: they also as they start playing it out on their head,
Speaker 1: have this thought of, oh, this is a child that
Speaker 1: will likely need my help for life in one way
Speaker 1: or another. Even if they become independent, even if all
Speaker 1: these things play out, there's still always going to be
Speaker 1: probably a need for me. And that has to be
Speaker 1: terrifying in just itself alone, because probably what you were
Speaker 1: imagining your future after having kids feels like that gets
Speaker 1: taken away from you.
Speaker 2: Yeah, yeah, for sure, there like grieving this whole life
Speaker 2: I thought we were going to have and I thought
Speaker 2: he would have and oh there was something that you
Speaker 2: just said. I think like one of the reasons too
Speaker 2: that we didn't this wasn't even on our radar, is
Speaker 2: that we didn't know anyone with a disabled child. Yes,
Speaker 2: I could, like my brain started bringing up, like, oh,
Speaker 2: I think didn't this one cousin once say that, like, oh,
Speaker 2: I think she has a disabled child. But it was
Speaker 2: people that I was not close to. So no one
Speaker 2: in my immediate circles, none of my family members, none
Speaker 2: of my close friends had disabled children, And so I
Speaker 2: think that was one reason that I wasn't even you know,
Speaker 2: it wasn't on my radar at all. But that also
Speaker 2: meant it was so lonely. I felt suddenly just so
Speaker 2: alone in this, and I was like, no one understands.
Speaker 2: I called my mom and I called my siblings, and
Speaker 2: I was like, I was like, oh, they think he
Speaker 2: has down syndrome. And the things that they said in
Speaker 2: response it wasn't bad. I'm sure I would have said
Speaker 2: the same thing, but it was just very clear to
Speaker 2: me if they have no idea what this is like.
Speaker 2: And again, that was just such a terrifying thought. I
Speaker 2: was very young too, I was twenty four years old,
Speaker 2: and so I was just, I don't know, very naive
Speaker 2: to hard things in life, and so this was really
Speaker 2: a very rude awakening to like things that can be
Speaker 2: really difficult in life and complicated.
Speaker 1: Okay, and now I'm like placing this and this is
Speaker 1: just so crazy to me. Are you I'd never ask age,
Speaker 1: but I'm just like, are you thirty one?
Speaker 2: Yeah? I am thirty one.
Speaker 1: I'm thirty one, and I'm sitting here and I'm not married,
Speaker 1: i don't have kids, but holy crap, that's the first
Speaker 1: thing that comes to my mind. Not only is this
Speaker 1: happening and this is big news, and yes, you have
Speaker 1: another child, so it wasn't like this was a okay,
Speaker 1: we were playing, this is part of the goal, but
Speaker 1: you were so young for that experience. Yeah, was that
Speaker 1: another thing that was going through your head. I'm really young,
Speaker 1: and I don't think I have the preparation to do
Speaker 1: what this is going to require of me.
Speaker 2: For sure. That was one of my first thoughts. Honestly,
Speaker 2: it was I'm too young for a child with Down syndrome,
Speaker 2: because that's what you hear, It's like the advanced maternal
Speaker 2: age and all of that. I was like, I'm twenty
Speaker 2: four years old, like this is not supposed to be
Speaker 2: happening to me right now, which of course it does
Speaker 2: happen to younger people. But that was like this assumption
Speaker 2: too that I felt almost this like immunity because I
Speaker 2: was so young. And then yeah, I mean there were
Speaker 2: so many times throughout our son's life too, as after
Speaker 2: he was born and at with different things that happened
Speaker 2: that were really hard. I remember thinking like I'm too
Speaker 2: young for this, Like I'm way too young for this,
Speaker 2: and I know, life just happens, right, it's not it's
Speaker 2: indifferent to your age and your experience. But it's interesting
Speaker 2: because I was talking to my mom about this recently,
Speaker 2: and she was like, Oh, I had that thought a lot.
Speaker 2: She's way too young to have to go through these things.
Speaker 2: And so I do feel like for being thirty one
Speaker 2: years old, I relate a lot with people who are older,
Speaker 2: like I have a lot of my best friends are
Speaker 2: forties and their fifties, because I think like the life
Speaker 2: experience that I've had up to this point have made
Speaker 2: me grow up more than I would have. Undoubtedly I've
Speaker 2: grown up a lot more than I would have without Kimball,
Speaker 2: and are experiences with.
Speaker 1: Him, Yeah, absolutely, And I could imagine that would just
Speaker 1: gosh send you on a completely different journey on so
Speaker 1: many levels. When you go back and you tell your
Speaker 1: husband this, that first conversation that you guys are having,
Speaker 1: is he reacting how you expected? What was that conversation
Speaker 1: like in those first few days moments, He's very even keeled,
Speaker 1: That's one way I describe him. So he's very much
Speaker 1: like the stoic, like stable one, and I'm not. I'm
Speaker 1: like more of the like passionate, reactive, over dramatic person
Speaker 1: in our relationship.
Speaker 2: And so when I called him, I buckled in. My
Speaker 2: daughter was shaking hands and as soon as I came
Speaker 2: out of the office, I was sobbing, and so I,
Speaker 2: like with trembling fingers, tried to call him as I
Speaker 2: got into the front seat to tell him this, and
Speaker 2: when he answered, it took me a little bit to
Speaker 2: compose myself enough to tell him, and so he kind
Speaker 2: of sat there, Oh, my gosh, what is she about
Speaker 2: to say, because he knew I was at this appointment,
Speaker 2: And I was like, they think that they think that
Speaker 2: Kimball has Down syndrome, because at that point we'd already
Speaker 2: named him, we already knew he was a boy and everything.
Speaker 2: We were really connected to him. And he was like, oh,
Speaker 2: I thought you were going to tell me that you
Speaker 2: had a miscarriage, because that was what was going through
Speaker 2: his head hearing me sobbing like this. And then I
Speaker 2: said something that I feel a lot of shame about now,
Speaker 2: but I have also a lot of self compassion for
Speaker 2: what I was going through at that point. But I
Speaker 2: said to him, that would have been easier. And I
Speaker 2: think at that point I was thinking about if we
Speaker 2: had lost him, I would go through the grief and
Speaker 2: it would be really traumatic and hard, and then we
Speaker 2: would move forward, which in hindsight, now, I don't think
Speaker 2: that's how. It would not have been that simple. It'd
Speaker 2: have been a huge loss. I was already twenty weeks
Speaker 2: at this point, But that's what that's how I viewed it.
Speaker 2: Like we would grieve it, we'd be really upset, and
Speaker 2: then we'd have another child, and then that child to
Speaker 2: be like quote unquote normal whatever that means, and then
Speaker 2: independent and all the things. But this life that we
Speaker 2: have with our son Kimball is going to be so
Speaker 2: difficult and it's going to be again this lifelong thing.
Speaker 2: And at least that's how I was perceiving at that point.
Speaker 2: And yeah, I think he felt relief that wasn't that
Speaker 2: we didn't lose him, and then he remained like this
Speaker 2: the stable one in our relationship. And it's really interesting.
Speaker 2: We've talked about it since about and with several other
Speaker 2: dads too. We actually did a whole episode about the
Speaker 2: kind of the dad perspective and how that's different than
Speaker 2: the mom's when you have disabled and medically complex children,
Speaker 2: and it was pretty unanimous among them. You feel like
Speaker 2: you have to be the strong one because of cultural
Speaker 2: and societal norms of I have to keep things together,
Speaker 2: I need to make sure the mom's okay and the
Speaker 2: baby's okay, and so really shoving down their own feelings
Speaker 2: and emotions and not feeling safe enough to struggle. I
Speaker 2: felt like I could struggle. I had all the permission
Speaker 2: to struggle, and I don't think he had that same
Speaker 2: safety And I feel sad about that now.
Speaker 1: Well. And it's true though, because in the very beginning
Speaker 1: stages from all of my mom friends, I've heard you
Speaker 1: have this just this such emotional connection because you're growing
Speaker 1: a human inside of you, and it's a different experience
Speaker 1: than the men are already having, So I could imagine
Speaker 1: that experience would stay that way, especially given a state
Speaker 1: like this. So that makes sense, like in my brain
Speaker 1: at least of the experiences that people have. But it's
Speaker 1: also not fair, right, because dads also deserve to have
Speaker 1: those emotions and feelings about a very life altering moment.
Speaker 1: But and it hurts you in a way that they
Speaker 1: feel like they have to be that way. So I'm
Speaker 1: happy that you were giving them the space to show that.
Speaker 1: So hopefully future dads in the situation can feel something
Speaker 1: for that and not feel like they have to be strong,
Speaker 1: because I think at least. I would imagine for both
Speaker 1: of you guys, it would take both of you to
Speaker 1: be strong, not just one of you.
Speaker 2: Yeah, for sure, I think it would have been a
Speaker 2: lot healthier than it wouldn't have been. Oh, I'm the
Speaker 2: one who freaks out and processes everything really messy, and
Speaker 2: you just are it's there, it's all bottled up inside. Right.
Speaker 2: It's not like they aren't experience those emotions as just
Speaker 2: they can't fully if you don't feel like you're allowed to.
Speaker 1: I want to know now to So this happens, this
Speaker 1: conversation happens, and obviously you have him and life is changed.
Speaker 1: So did he end up having what they expected or
Speaker 1: was it something else? What happened as that course changed?
Speaker 1: Because also they're predicting this and based on numbers and
Speaker 1: what they're seeing on sonograms, and I know that can
Speaker 1: change as they're born and other things developed. So what
Speaker 1: happened after he was born?
Speaker 2: Actually it was a week later after this ultrasound that
Speaker 2: the test results came back negative for Down syndrome. And
Speaker 2: so I think this really set the precedents too of
Speaker 2: a life just full of roller coasters, and really that's
Speaker 2: I think that's one thing that you've just surrendered to
Speaker 2: once you get used to one idea and then all
Speaker 2: of a sudden it's a whole different thing, and just
Speaker 2: being like, you know what, this is how it's going
Speaker 2: to be from here on out. And that really was
Speaker 2: the case for us for the first few years of
Speaker 2: his life too. But we because it came back negative,
Speaker 2: the doctor was like, it's probably something very rare because
Speaker 2: it tested for like the twelve or twenty round whatever
Speaker 2: number it is most common abnormalities, you know, in birth.
Speaker 2: And at that point we were launched into the world
Speaker 2: of rare and that was really scary to be like, Okay,
Speaker 2: like I first, I got launched into this like mini
Speaker 2: community subset of people, or like the down syndrome community,
Speaker 2: or there are actually a lot of like within the
Speaker 2: world of disability that's a very prevalent, robust community. And
Speaker 2: so then to suddenly be like, oh, actually you don't
Speaker 2: belong here. You're gonna we're gonna shuffle you out into
Speaker 2: this other corner that's even more isolated from culture and
Speaker 2: your friends and everyone around you. And during the course
Speaker 2: of the next few months of pregnancy with him, we
Speaker 2: had lots and lots of ultra sounds. So I got
Speaker 2: a lot of baby pictures of him, which was one perk.
Speaker 2: But they were like, we think he has this really
Speaker 2: rare condition. It's called condor displaysia punk Tata xling type one,
Speaker 2: which is just a little general.
Speaker 1: Because you're like, okay, so what does that mean exactly?
Speaker 2: And if you translate the word over directly, one of
Speaker 2: the things is that it says people with this syndrome
Speaker 2: they have polka dots in their joints, which is what
Speaker 2: you can see in ultrasound. It doesn't really affect them
Speaker 2: like functionally, but that was one way they're like, oh,
Speaker 2: this is a marker for the syndrome, and then he's
Speaker 2: checking all these other boxes. And so that diagnosis ended
Speaker 2: up being confirmed after he was born, and so we
Speaker 2: learned that there were one hundred and twenty five other
Speaker 2: people in the world with confirmed cases of this, and
Speaker 2: so ultra rare, very little ever in the year or
Speaker 2: I think ever documented. Wow, And so yeah, and we've
Speaker 2: learned later too, because it's with these rare diseases you
Speaker 2: find out more. In the best cases, you learn more
Speaker 2: and more as time goes on, and we've learned recently
Speaker 2: with new research that's come up that oftentimes these babies
Speaker 2: die before they're born due to brain bleeds that often
Speaker 2: are not caught before birth, and he luckily did not
Speaker 2: have that symptom, and that's why he was born alive.
Speaker 2: But we knew that there was a high chance of
Speaker 2: them of him passing away before birth, and so that
Speaker 2: was also this whole other layer where before it was like, oh, disabilities,
Speaker 2: that's really hard and that's different, and it has the
Speaker 2: stigma and I'm not sure how to help him and
Speaker 2: get all the support we need and it'll be so
Speaker 2: much work for me. But then and oftentimes I do
Speaker 2: have heart abnormalities and that's scary too. But it really
Speaker 2: wasn't the medical side really wasn't a part of this yet.
Speaker 2: And then when we got that diagnosis, it was like, oh,
Speaker 2: we are going to help this child fight for his life.
Speaker 2: That's what this is. And so we immediately had very
Speaker 2: specialists that were meeting with us and talking about the
Speaker 2: different interventions they would do once he was born and
Speaker 2: what it would likely be like. And they were told
Speaker 2: us we had to deliver at the specific hospital because
Speaker 2: it had the highest level nik you that was most
Speaker 2: likely to help him survive, and so it just really
Speaker 2: and again like I just felt, I was like, I'm
Speaker 2: so young. I'm so young to be dealing with this
Speaker 2: stuff like this is so scary something you never think
Speaker 2: you're going to be facing in your life.
Speaker 1: Yeah, you're getting all of this information, which I would
Speaker 1: think is very overwhelming because you don't understand any of it.
Speaker 1: You're going to specialists, You're probably dealing with a lot
Speaker 1: of medical bills that you weren't prepared for in the
Speaker 1: first place. You are being talked to about something that
Speaker 1: you're growing inside of you that may not make it,
Speaker 1: but if it does, it may not make it later.
Speaker 1: And you're sitting here just having so many variations. You
Speaker 1: mentioned the roller coaster, but Madeline, this might be the bumpiest,
Speaker 1: like the roller coaster that doesn't have any screws, is
Speaker 1: what it feels like the way that you're describing it.
Speaker 1: And to be two people who are experiencing that along
Speaker 1: with already having a child that you're supposed to be
Speaker 1: loving and caring for. I just I want to recognize
Speaker 1: how much strength all of you have to have went
Speaker 1: through that, just the emotional turmoil that you probably went
Speaker 1: through throughout the entire beginning until you the reward of
Speaker 1: having him in your life. It was like you had
Speaker 1: to emotionally go through so much just to get there.
Speaker 2: Yeah. Yeah, looking back at it, I'm like, oh yeah,
Speaker 2: like I can see where, like you do, you need
Speaker 2: a lot of resilience to get through things like that.
Speaker 2: But I think at the time it just felt like
Speaker 2: being beaten to a bloody pulp of I can't handle this,
Speaker 2: I can't handle this, and just thing after thing that
Speaker 2: was so beyond my capacity, because it really was. But
Speaker 2: then hindsight's twenty twenty, and I can be like, okay,
Speaker 2: that that was so incredibly painful, But I also can
Speaker 2: recognize qualities that I have now that I wouldn't have
Speaker 2: been able to get any other way. And so I
Speaker 2: think in that way it helps me. That's actually helped
Speaker 2: a lot with healing passed a lot of those traumatic
Speaker 2: experiences as recognizing the good that's come from it. As
Speaker 2: cliche as that sounds, and I think that takes a
Speaker 2: lot of distance and stability to be able to see
Speaker 2: that for what it is later, But I think that's
Speaker 2: helped me come to terms with that time because honestly,
Speaker 2: like thinking about that time it gets by heart rate going.
Speaker 2: I'm like, oh, I just I feel for that version
Speaker 2: of myself because it was so scary and so dark,
Speaker 2: And I just remember this one conversation we had, which
Speaker 2: was probably the lowest point that we were emotionally. It
Speaker 2: was I think it was like probably a month before
Speaker 2: he was to be born, and we met with the
Speaker 2: palliative care team, a pediatric palliative care team, and they
Speaker 2: basically were talking about it, talking to us about like
Speaker 2: quality of life and how our lives were about to
Speaker 2: change dramatically, and how we should make sure we had
Speaker 2: a plan so that our daughter could be rushed to
Speaker 2: the hospital things were looking like he wouldn't make it
Speaker 2: so she could meet him, and she's just toddling around
Speaker 2: in the back of this room while we're talking about
Speaker 2: these like horrible, harrowing things. I remember laying in bed
Speaker 2: because I don't think any of the doctors had really
Speaker 2: talked to us about the possibility of him dying, right.
Speaker 2: It was so much of here's how we're going to
Speaker 2: help him survive. Here's what we're gonna do, here's the plan.
Speaker 2: This was the first time we had anyone in the
Speaker 2: medical world sitting us down okay, but let's talk about
Speaker 2: what happens if he doesn't make it. And so I
Speaker 2: remember going home from that and just laying in bed
Speaker 2: with the blinds drawn and just unable to get up.
Speaker 2: I was like, this is so scary, and at the
Speaker 2: time it was interesting. I had a no sorry, let
Speaker 2: me resay that. A few months later, after Kimball was born,
Speaker 2: a friend of mine had a baby that passed away
Speaker 2: right before he was born, because we were pregnant at
Speaker 2: the same time and they were due like three weeks apart.
Speaker 2: And I just remember watching them go through this and
Speaker 2: still now when I see them talk about it, and
Speaker 2: just the way that it completely shattered their lives and
Speaker 2: their hearts, and I sho remember thinking like, I don't
Speaker 2: understand what they're going through, but I feel like I
Speaker 2: can empathize better than most people can who haven't actually
Speaker 2: had this happen to them, because it was like they
Speaker 2: were in this dark alleyway and I had peered around
Speaker 2: the corner and I had like really grappled with what
Speaker 2: it would be like to be in that alleyway. I'd
Speaker 2: really thought, what is this going to be like if
Speaker 2: our son passes away? And so because of that I
Speaker 2: feel like, I don't know, it was like teetering on
Speaker 2: those two worlds, right between those worlds of child loss
Speaker 2: and then having a medically complex child. And I'm grateful
Speaker 2: every day that we ended up not going down the
Speaker 2: proverbial alleyway and instead have a medically complex child. But it, yeah,
Speaker 2: it was a very dark time.
Speaker 1: Yeah. Wow, I'm just I'm like, truly, it is a
Speaker 1: beautiful resilience that you guys have, and I don't know
Speaker 1: that anybody can never understand what that experience was like
Speaker 1: for you guys, either of you guys, your friend or
Speaker 1: for you and it's so individualized that even hearing you
Speaker 1: talk about it, like, there's just no there's no way
Speaker 1: I can truly grasp those emotions that you were experiencing
Speaker 1: in that moment. But I do appreciate you sharing them
Speaker 1: because somebody out there will need to hear it and
Speaker 1: we'll have had similar experiences and need that. And if
Speaker 1: I remember correctly, based on your some of your social
Speaker 1: media content I was watching, he had quite a few
Speaker 1: things that he had to do when he was first born,
Speaker 1: and he did make it, and he had to have
Speaker 1: stuff happening all around him for a lot of that
Speaker 1: time period, and I'm not sure how long, but I'm
Speaker 1: curious what that experience is like, because you get excited
Speaker 1: he's here, he was born, yay, but also what's about
Speaker 1: to happen now?
Speaker 2: Yeah, I mean it was interesting that dynamic, because You're right,
Speaker 2: it was this. When I gave birth to him, it
Speaker 2: was this huge flurry. I was induce so our special
Speaker 2: doctor could be there and this whole team would be ready,
Speaker 2: and then all of a sudden, he just like came
Speaker 2: like way faster than they thought, so she never even
Speaker 2: made it there. I mean, like the room was completely full.
Speaker 2: They were like, everyone get in here now because this
Speaker 2: really like fragile baby's about to be born. And so
Speaker 2: the room was just full of commotion, and they delivered
Speaker 2: him and then whisked him out of this like little
Speaker 2: window they had that connected to the nicicu and then
Speaker 2: it was completely empty, and I was just sitting there
Speaker 2: by myself, and I just remember being like, oh my gosh,
Speaker 2: like I did it and he was born alive. And
Speaker 2: I think at that point too, I was like I
Speaker 2: got this all done. Because childbirth is intense, like in
Speaker 2: and of itself, right, that's like its own whole thing.
Speaker 2: So I was like, yeah, I'm maud of myself.
Speaker 1: You're mentioning that you had a room full of people,
Speaker 1: and You're like, I am very vulnerable and I'm about
Speaker 1: to have this huge moment in my life and then
Speaker 1: it's just everybody's gone. I like the juxposition of that
Speaker 1: experience alone.
Speaker 2: Yeah, it was. Yeah, it was crazy. And I think
Speaker 2: it was interesting because I with my daughter, I had
Speaker 2: the experience of delivering her and then they placed her
Speaker 2: on my chest and then I just have this bonding moment,
Speaker 2: and I knew I wouldn't have that with Kimball, and
Speaker 2: so I think that was actually really helpful to know
Speaker 2: that ahead of time. I've talked to their parents who
Speaker 2: didn't know, like they had no idea anything was wrong
Speaker 2: with their baby, and then they were born and then
Speaker 2: whisked away, and I think that's far more traumatic in
Speaker 2: that way. But I had the knowledge beforehand that there's
Speaker 2: no way he will get whisked off, so they can
Speaker 2: stabilize him. And I remember laying there being like, how
Speaker 2: I'm feeling pretty good. I delivered him. He was alive,
Speaker 2: Like they're stabilizing him. My husband's there with him, and
Speaker 2: and so the moment of not being able to hold him,
Speaker 2: I think felt I don't see what's the right word.
Speaker 2: It didn't feel funny, but it felt almost Wow, this
Speaker 2: is a really weird experience. They took the baby out.
Speaker 2: He's gone, and then my husband came in and showed
Speaker 2: me a picture of him. That's how I saw him
Speaker 2: for the first time, because they held him up really
Speaker 2: briefly and then whisked him away, so I didn't really
Speaker 2: see him at first. So he showed me this picture
Speaker 2: of this adorable fat baby. Completely he was sedated, like
Speaker 2: they had to give him extra doses of sedation to
Speaker 2: be able to intubate him, and so they were shoving
Speaker 2: the breathing tubes down into his lungs and I guess
Speaker 2: he had been pulling them out and so they had
Speaker 2: to sedate him. And so I saw this like adorable
Speaker 2: splade baby, and I was like, oh, my gosh, there
Speaker 2: he is. There's Kimball. And so I think it was
Speaker 2: just it was a very humanizing moment to be like,
Speaker 2: he's a real human baby and he is mine and
Speaker 2: I'm his mom. And I felt so proud of us,
Speaker 2: like forgetting this far. And they wheeled me back to
Speaker 2: see him, and so I was like, because I had
Speaker 2: just had him, and so I was in a wheelchair
Speaker 2: and it brought me back to the nicky to see him,
Speaker 2: and there was this beautiful baby and I was like,
Speaker 2: he's mine. I don't know. It was interesting how it's
Speaker 2: like there's this almost detachment because he wasn't just laid
Speaker 2: on my chest. It wasn't like on now, I'm never
Speaker 2: parted with him like it was with my daughter, because
Speaker 2: he was like being taken care of by other people.
Speaker 2: It almost felt like this little every morning when we
Speaker 2: would go once I was discharged and we'd come visit
Speaker 2: him in the nicke, you it felt like Christmas morning.
Speaker 2: Like every morning it was like, oh, there he is,
Speaker 2: there's my son. And it was just such an interesting
Speaker 2: experience and it was very painful to leave him there,
Speaker 2: but at the same time, it was a very unique
Speaker 2: feeling of joy to go there and to feel so
Speaker 2: proud of this baby that was mine and so you
Speaker 2: brought him.
Speaker 1: Into the world, so I could see how that like,
Speaker 1: he is mine, but also I don't have him yet,
Speaker 1: and you're used to the experience that you had with
Speaker 1: your daughter, so vastly different.
Speaker 2: Yeah, It was messy, for sure. It was so there
Speaker 2: were those intense emotions of joy and like pride over him, Look,
Speaker 2: we did it, he's here, and being so grateful that
Speaker 2: he was there safely, as well as obviously a lot
Speaker 2: of anxiety about will he stay okay, And we weren't
Speaker 2: able to hold him for the first I think it
Speaker 2: was on day like nine we were able to hold
Speaker 2: him because he had this as part of a syndrome.
Speaker 2: His cervical spine was not hardened the bones, the vertebrae
Speaker 2: there and on the C one and C two level,
Speaker 2: so it's a very like catastrophic catastrophic area to not
Speaker 2: be stable to protect his cervical spine, and so if
Speaker 2: he put his chin down to his chest he could
Speaker 2: be paralyzed or die. And so it was like they
Speaker 2: actually kept him sedated the first week too, so we
Speaker 2: didn't see his eyes, we didn't know what color his
Speaker 2: eyes were yet, to keep him from moving around too
Speaker 2: much and injuring himself. So I think just things like
Speaker 2: that was just it was so vastly different than your
Speaker 2: typical baby experience, and so there was a lot of
Speaker 2: anxiety there. There was also like that longing to hold him.
Speaker 2: At first, I was like just so proud of the
Speaker 2: picture we had and being able to see him, But
Speaker 2: then I felt angry. I was like, I want to
Speaker 2: be able to hold my baby. I can't even hold him.
Speaker 2: I can just touch him while he's on this bed
Speaker 2: other people are taking care of him. It was such
Speaker 2: a detached parenting experience, and I knew what it was
Speaker 2: supposed to be. Like, I was like, I'm not a
Speaker 2: first time mom, Like I'm watching these strangers like change
Speaker 2: his diaper. And they allowed us to do what they
Speaker 2: called his cares, which is changing diapers and like switching
Speaker 2: around his little like pull socks on his foot and
Speaker 2: things like that. And they were like, oh, you can
Speaker 2: do some of the cares if you want to, like
Speaker 2: help you like bond with your baby and stuff. And
Speaker 2: so I remember changing his diaper and it was a
Speaker 2: wet diaper and I was like, should I like wipe
Speaker 2: him if it's just pete? And I was like, what
Speaker 2: is happening right now? Why am I asking a nurse
Speaker 2: if I should wipe my baby's bum? I am a mom,
Speaker 2: Like I already know all this stuff. It just felt
Speaker 2: so weird to feel like I had to ask permission
Speaker 2: for everything when I already was I already was an
Speaker 2: established mom at this point.
Speaker 1: That experience just being in there, and you feel a
Speaker 1: little helpless too, I would think, because you are asking someone,
Speaker 1: but also you can't do all the things that you
Speaker 1: know you're capable of doing, but it's like you're not
Speaker 1: allowed to until given that space. So how long was
Speaker 1: he in the nick U four He was.
Speaker 2: There for twenty two days, which felt so long to
Speaker 2: me at the time, But we also watched another little
Speaker 2: resident there have her first birthday there and she had
Speaker 2: not gone home yet, So I think I also felt
Speaker 2: the gravity of I'm so grateful that he didn't have
Speaker 2: to stay here very long, and I'm so grateful he's
Speaker 2: coming home because we didn't know if we would take
Speaker 2: him home, and there was a moment where he had
Speaker 2: just come out of surgery and things were looking dicey,
Speaker 2: and so being able to bring him home was again
Speaker 2: it was like bringing home this little like this ultimate
Speaker 2: Christmas present of our baby's coming home now, which again
Speaker 2: it was Yeah, it's just so surreal the way it happened.
Speaker 1: Yeah. So then the years that follow and he's now seven.
Speaker 1: In those years, like what has been the medical responsibility
Speaker 1: for you guys. Been like, as he does grow up
Speaker 1: and he becomes his own little human and gets into
Speaker 1: all the fun years and you guys get to do
Speaker 1: stuff with him. What is that other side, though, the
Speaker 1: care that goes into making sure he's allowed to have
Speaker 1: those experiences.
Speaker 2: So in the first few years, the biggest the biggest
Speaker 2: hurdle was his neck, right making sure he didn't because
Speaker 2: babies and kids, like, they fall over, they roll over
Speaker 2: like they're doing a lot, and having this thing hanging
Speaker 2: over us of oh, but he can't fall or he'll
Speaker 2: break his neck and maybe die or be paralyzed was
Speaker 2: just this really heavy, ominous thing. So we have these
Speaker 2: big cervical spine collars, like kind of like the ones
Speaker 2: you see when people break their neck. He had that
Speaker 2: on from day seven or whatever day it was that
Speaker 2: they made it for him, and so that was a
Speaker 2: big part of his care. We also had a rollercoaster
Speaker 2: with that where there was one appointment they were like, oh,
Speaker 2: actually it's all hardened. It's great, You're good to go.
Speaker 2: You don't need this anymore. You don't need this big
Speaker 2: invasive surgery to fix it like we thought you would.
Speaker 2: And we were like on cloud nine bringing him home
Speaker 2: without this and finally being able to hold him without
Speaker 2: this brace. And then three months later at the follow up,
Speaker 2: they were like, no way, Like the other doctor was
Speaker 2: completely wrong. This is so dangerous. And to realize that
Speaker 2: whole time, he could have died anytime during that point
Speaker 2: or any point during that time. Yeah, so that was
Speaker 2: really scary. And so again that roller coaster of going
Speaker 2: up and down, and then later it did harden and
Speaker 2: so he never ended up needing this huge surgery and
Speaker 2: he didn't need the color anymore. So that was a
Speaker 2: huge relief. And that was like, like, over the years
Speaker 2: medically he's stabilized to where he is now, and so
Speaker 2: just one thing at a time was dropped off the
Speaker 2: plate of medical care. So that was one huge one.
Speaker 2: He also had a feeding tube for the first few years,
Speaker 2: and so once he weaned off of that, that was incredible.
Speaker 2: Although it was so cute because his perspective of his
Speaker 2: disabilities is very different than ours, Like he's always been
Speaker 2: so proud and which I love, but like when we
Speaker 2: removed his he had a g twobe button and so
Speaker 2: that just goes right into his stomach and so you
Speaker 2: were able to feed him that way. And so the
Speaker 2: day we removed that little button that went into his stomach,
Speaker 2: he was so upset. We had ice cream ready, we
Speaker 2: were gonna have this big party, and he just laid
Speaker 2: on the floor with his special blanket like crying. I
Speaker 2: was like, oh, my gosh, he's really sad. And he
Speaker 2: used to play with his little button when he was
Speaker 2: nervous or like sad. So I realized, like, we just
Speaker 2: removed a body part of his basically to him, like
Speaker 2: he never remembers not having it. It's been very interesting
Speaker 2: to see the difference in how he feels about that
Speaker 2: type of thing to compared to how we feel because
Speaker 2: we're like, oh, you shouldn't have needed that in the
Speaker 2: first place. I'm so sorry this happened to you. And
Speaker 2: for him, where'd my button go?
Speaker 1: Like?
Speaker 2: I really liked playing with that. Yeah, So that's been
Speaker 2: really interesting.
Speaker 1: The kid's perspective is so cool. They don't see it
Speaker 1: as anything other than just them. This is who I am,
Speaker 1: this is how I was born. And it's cool to
Speaker 1: hear that was the experience because I I bet that
Speaker 1: allowed you guys to have even more perspective of him,
Speaker 1: thinking he probably felt all the things that you guys
Speaker 1: were feeling, and he was born and all of this
Speaker 1: emotional experience that you guys went through of this is
Speaker 1: what his life is going to be like and he
Speaker 1: was just born. I was like, this is just me.
Speaker 2: Yeah, yeah, for sure. He also is. Part of his
Speaker 2: diagnosis is deaf blind, which means he just has that
Speaker 2: dual loss of visual impairment and hearing loss. So in
Speaker 2: the first little bit when he was a baby, he
Speaker 2: was profoundly deaf and profoundly blind, and so I just
Speaker 2: remember that same type of thing of projecting how I
Speaker 2: would feel. I love being like, what would it be
Speaker 2: like to only have light perception at like bright windows
Speaker 2: and to have these squeaky little hearing aids that are
Speaker 2: like sound completely different and he really can't hear that
Speaker 2: well with these either, Like that was something that I
Speaker 2: felt so distraught about. But he has now his vision
Speaker 2: has improved from what it used to be, and so
Speaker 2: he's pretty functional with it. But even like he can't
Speaker 2: he will often not see things that are clearly there,
Speaker 2: and he's just happy to be here. And it's just
Speaker 2: it's very interesting to see how it doesn't phaze him
Speaker 2: because he doesn't know any different. I think sometimes his
Speaker 2: parents that's a really sad thought of, Oh, he doesn't
Speaker 2: know any different, But he doesn't know any different, and
Speaker 2: so I think really coming to terms with that has
Speaker 2: really helped too, and how I view his disabilities. So
Speaker 2: he's fine with this. And he does have dwarfism, so
Speaker 2: he's very tiny. He looks like a three year old
Speaker 2: even though he's almost seven, and sometimes he'll be like, oh,
Speaker 2: I want to be tall. But other than that, he
Speaker 2: just struts right into school. I'm super confident and proud
Speaker 2: of himself and all the parts of him. And so
Speaker 2: that's been something I wish I could have shown myself
Speaker 2: in those first few weeks after finding out that he
Speaker 2: would be disabled, to be like, but look like, look
Speaker 2: at this adorable child that's alive and medically stable and
Speaker 2: embraces himself with all of his disabilities. And the I
Speaker 2: think one of the hard parts of this is that's
Speaker 2: not the case for a lot of parents, right that
Speaker 2: it doesn't often happen where they stabilize medically and then
Speaker 2: everything's like you're just assisting them with their disabilities, but
Speaker 2: everything's okay. I think for a lot of parents and
Speaker 2: especially the ones I talk to their child's diseases progress
Speaker 2: until they pass away before adulthood. And that is the
Speaker 2: really heavy hard side of this is that my story
Speaker 2: is not the story for many parents, and I'm very
Speaker 2: aware of that. And so you asked at the beginning
Speaker 2: why I started the podcast that I did, and it
Speaker 2: really goes it's those are the parents that I really
Speaker 2: aim to serve, or the parents who, first of all,
Speaker 2: the ones that are experiencing things the way I did
Speaker 2: in those dark early days, as well as the parents
Speaker 2: who stay in those dark days, right, the ones who
Speaker 2: don't have the happy ending with the flowers and the
Speaker 2: confident child and all those things, The parents who will
Speaker 2: lose that child, the one that they've grown to love
Speaker 2: so much, and it's just such an isolating experience. And
Speaker 2: I think community is something that can be so empowering
Speaker 2: and so healing. So that drives everything that we do
Speaker 2: to try to help create that community. And there's already
Speaker 2: there are so many parents doing similar things. I'm not
Speaker 2: the only one creating that community, but I think every
Speaker 2: effort there is so important.
Speaker 1: And to your point, because there are rare conditions, these
Speaker 1: are things that are isolating and feel very lonely. So
Speaker 1: anything anybody can do to help, just provide a space
Speaker 1: where people can feel seen and connected to is the
Speaker 1: best thing. That was the purpose of my podcast was
Speaker 1: doing that, just in a broader sense, not as niche.
Speaker 1: So I love what you're doing. I think it's incredible.
Speaker 1: It's how I found you when I was trying to
Speaker 1: find someone to share their story and be willing to
Speaker 1: because it's also hard to share a story like this
Speaker 1: and have so many experiences that you've had and be like, yeah,
Speaker 1: let me keep reliving them or let me keep talking
Speaker 1: about them. That's not an easy thing to do. So
Speaker 1: I love what you're doing and I think it's awesome.
Speaker 1: And you do mention your daughter. You have two kids.
Speaker 1: What is it like the experience for you now parenting
Speaker 1: kids that have differences.
Speaker 2: At the beginning, it was so hard and scary because
Speaker 2: our daughter Wendy was really struggling while I was struggling.
Speaker 2: I think it had more to do with me struggling
Speaker 2: than it did her brother struggling. At the time, I
Speaker 2: think that instability has a stay at home mom before
Speaker 2: that and everything, so like we were together all the time,
Speaker 2: and so I think that me having a hard time
Speaker 2: emotionally therefore translated over to her, and I felt like
Speaker 2: I was drowning and she was drowning too next to me.
Speaker 2: But there was nothing I could do because I was
Speaker 2: also drowning, and so that was incredibly painful. But as
Speaker 2: Kimball has stabilized over the years and I've also stabilized,
Speaker 2: it's become just part of our family, just the way
Speaker 2: our family is. We talk about Kimball's we make jokes
Speaker 2: about his hearing aims, or oh, he totally misheard me,
Speaker 2: or sometimes he'll walk into a room that I'm sitting in,
Speaker 2: like mom, and scan the room and then walk out
Speaker 2: and look in all the other rooms and then I'll
Speaker 2: bet kim Mo'm in here, and then he walks and
Speaker 2: he's like, that was magic. Yep, Kimball, that was magic.
Speaker 2: That's incredible, you disappeared here. So just little things like
Speaker 2: the Wendy and her dad and I can have little
Speaker 2: jokes about because funny little things like that happen related
Speaker 2: to his disabilities. And I think we're also going to
Speaker 2: test her for autism, because that's one thing that we've
Speaker 2: been curious about, especially with the way that she really
Speaker 2: struggled in the beginning with that change. And so when
Speaker 2: I first talked about this with her, Hey, Wendy, I
Speaker 2: think you might be autistic. And this is something too
Speaker 2: that I've become so much more open to and neutral
Speaker 2: about because of being exposed to disabled individuals and autistic adults,
Speaker 2: and so for me, there wasn't that stigma that I
Speaker 2: think there is for some people. And so I was like,
Speaker 2: you know, like, Wendy, I think you might be autistic.
Speaker 2: And I was like, it's a different type of disability,
Speaker 2: and she was like, oh my gosh, I might be
Speaker 2: disabled like Kimble, and she was just thrilled. So I
Speaker 2: think that's something that I have felt has been such
Speaker 2: a strength to her, is being able to have that
Speaker 2: perspective and right from the get go that I didn't
Speaker 2: have as an adult when I was pregnant with Kimball.
Speaker 2: That was like the world was ending to me, even
Speaker 2: just the disability side of it. And for her, she
Speaker 2: was just thrilled to think that she might be in
Speaker 2: this club of being a disabled person, and I think
Speaker 2: that has made me very proud of her. And then
Speaker 2: there's also this experience that we had recently where so
Speaker 2: I'm a carrier for our son's condition. So I passed
Speaker 2: it to him, passed it to him unknowingly, I have
Speaker 2: a fifty to fifty chance of passing it on to children.
Speaker 2: Boys are the only ones who manifested. This is all
Speaker 2: the genetics stuff that I forgot from high school and
Speaker 2: I had to relearn as it really impacted my real life.
Speaker 2: But so our daughter Wendy had a fifty chance of
Speaker 2: being a carrier for this as well and having the
Speaker 2: same from what I a similar experiences I've had having children,
Speaker 2: and so that was this really intense thing. And she
Speaker 2: decided she wanted to be tested when she's nine years
Speaker 2: old right now, so that look down upon. We had
Speaker 2: to push back against the geneticis being like, that's too young.
Speaker 2: She should wait till she's about to find about to
Speaker 2: have children if she chooses to. But she wanted to know.
Speaker 2: She was like, I want to know if I'm a
Speaker 2: carrier or not. And so we walked this path with her.
Speaker 2: This is just so recent, which the last couple of months,
Speaker 2: and it was very emotional, is a very heavy thing
Speaker 2: to watch her going through, but she handled it with
Speaker 2: so much self compassion and self awareness, and I was
Speaker 2: so proud of her, and so we later found out
Speaker 2: she came back negative for it, which was a huge celebration,
Speaker 2: But throughout the whole process, I was like, she's had
Speaker 2: to grow up faster than her peers in this type
Speaker 2: of this heaviness that she's had in her life, and
Speaker 2: to be able to see the benefits that has also
Speaker 2: caused her. Like I was talking about the beginning of
Speaker 2: seeing the hard things that we've been through and to
Speaker 2: be like, oh, I can see the benefits that's had
Speaker 2: in my life in different qualities I have now And
Speaker 2: so it's been really cool to see a version of
Speaker 2: that in our daughter because these children, the siblings, are
Speaker 2: going along the ride. They're not the parents and they're
Speaker 2: not the disabled person, but they're going along in their
Speaker 2: own unique perspective with the same just that we are.
Speaker 2: And so that has made me feel very proud of her.
Speaker 1: Wow, it, Madeline, it sounds like your kids are just
Speaker 1: being raised with so much love. That's what comes through
Speaker 1: in your stories and what you're talking about. And I
Speaker 1: know sometimes it's hard as a parent, like bigger picture
Speaker 1: to you see them and you're proud of them, but
Speaker 1: to also know your role in your husband's role, and
Speaker 1: because that doesn't just happen like we are how we
Speaker 1: were raised and what's around us, and your daughter and
Speaker 1: your son just sound so full of life and so
Speaker 1: just ready to take on anything that comes at them,
Speaker 1: and I think it's really awesome.
Speaker 2: Thank you so much.
Speaker 1: Yeah, And before we start to get towards the end
Speaker 1: of this, I want to acknowledge too, like you're a human,
Speaker 1: your husband's a human. You guys were experiencing these things.
Speaker 1: How were you also making sure to show up for
Speaker 1: yourselves and take care of yourselves while all of this
Speaker 1: stuff started happening in your life? And just over the
Speaker 1: course of this entire.
Speaker 2: Experience, I the sense the community aspect has become a
Speaker 2: huge part of processing and healing for me. But during
Speaker 2: the thick of it, I had no idea how to
Speaker 2: find people who understood. So I really was going through
Speaker 2: a lot of this completely alone. As far as people
Speaker 2: who understood what we were going through, we had family
Speaker 2: and friends that were very supportive, But in those first
Speaker 2: few years before I found that community, I just held
Speaker 2: on as tired as I could to a self care
Speaker 2: routine I had before we had Kimball, and that was
Speaker 2: a class called Zoomba. It's a group fitness class, yeah,
Speaker 2: where you danced together with other men and women and
Speaker 2: that's your exercise. And so that was something that I
Speaker 2: religiously kept continued doing while I was pregnant with Kimball
Speaker 2: and while all the stuff was happening, and then after
Speaker 2: he was born, and I remember so my husband was
Speaker 2: very supportive and like I was a stay at home mom,
Speaker 2: so he'd come home and then I'd hand the baton
Speaker 2: off to him and go off to my class. And
Speaker 2: there were a couple of weeks where I had to
Speaker 2: miss and I both times, I like had a complete
Speaker 2: meltdown and we were like, that's funny, that's the week
Speaker 2: I didn't go to Zoomba. So at that point we're
Speaker 2: like non negotiable, like I have to go. And it
Speaker 2: was twice a week, so it wasn't like as an
Speaker 2: everyday thing, but that I think that was just enough
Speaker 2: space for me to feel like myself, because as you
Speaker 2: go through these experiences, you do change in like every
Speaker 2: way possible. It really does feel like your previous self
Speaker 2: is almost unrecognizable. So I think having something that was
Speaker 2: like this aspect that I had before and then the
Speaker 2: during and then the after felt very grounding to me
Speaker 2: and very familiar to me. And not only that, but
Speaker 2: the researched benefits of exercise and actually found out recently
Speaker 2: they said that for stress reduction, dancing is the most
Speaker 2: preferred form of exercise, and I was like, there, you
Speaker 2: got it too. Yeah, So I do think it's something
Speaker 2: that's so light and silly in the midst of stuff
Speaker 2: that was so heavy and dark. And I actually remember
Speaker 2: being in class sometimes when we had an extra aggressive song.
Speaker 2: I don't know how else to describe it, but when
Speaker 2: you're like, ah, you're like pounding your feet or whatever
Speaker 2: it is, and I remember tearing up. I don't think
Speaker 2: I was like falling. I wasn't sobbing, but I was
Speaker 2: like crying as I was doing that because it just
Speaker 2: felt so good to almost like releasing the anger through
Speaker 2: this exercise. Too. Of we found out this news and
Speaker 2: just processing it while I was sitting there like just
Speaker 2: dancing along with my peers and sorry. And then recently
Speaker 2: I went back to that class I had. There was
Speaker 2: a couple of years where we didn't I didn't go
Speaker 2: to that one class specifically with that teacher, and then
Speaker 2: I went back again and I was like, oh, this
Speaker 2: feels like going back to my therapist because it has
Speaker 2: brought back so many of those emotions that I processed
Speaker 2: while being in this zumba class, and anyway, that has
Speaker 2: been something that's been really helpful to me. But if
Speaker 2: anyone's listening and also they want some kind of tool
Speaker 2: to help themselves through things like this, I would recommend
Speaker 2: something like their version of zumba. Right, it doesn't need
Speaker 2: to be Zoomba, but something that maybe they enjoyed or
Speaker 2: helped them find lease or connection or whatever it is
Speaker 2: made them feel good in some way previous to this happening,
Speaker 2: and then to see if there's a version of that
Speaker 2: you can keep doing. If you can't do that exactly
Speaker 2: the exact thing, because I think that was like the
Speaker 2: perfect combination to help me feel okay during all of this.
Speaker 1: I love that you had that outlet, and it being
Speaker 1: zoomba just makes it all the more better because working
Speaker 1: out is so good for you. But something about you
Speaker 1: doing zoomba and just having all these experiences, it just
Speaker 1: makes me smile to think, like, that was your outlet.
Speaker 2: I love that, and no one there had any idea, right,
Speaker 2: They're just like I'm just here zoom, and I'm like, oh,
Speaker 2: I'm processing trauma and all the things.
Speaker 1: Like I gotta stop my foot really hard, and don't
Speaker 1: pity me.
Speaker 2: Okay, let me scream for a second.
Speaker 1: Yes, I'm really glad you had the outlet, and I'm
Speaker 1: glad you were able to take care of yourself, and
Speaker 1: not only that you had a partner who is supportive
Speaker 1: in that, because that is also a battle in itself.
Speaker 1: So just really awesome. I always like to end episodes
Speaker 1: and I think I could talk to you for because
Speaker 1: what you're doing in your podcast is so important, but
Speaker 1: beyond that, your experience in life and just crazy sitting
Speaker 1: here and we're both thirty one years old and just
Speaker 1: vastly different life experiences, which I think is so cool.
Speaker 1: I love that this is a beautiful life that you've had,
Speaker 1: and I just I love that, Like I'm sitting here
Speaker 1: and I could genuinely sit here and talk forever, but
Speaker 1: we won't because we've got plenty of things to do.
Speaker 1: So what I like to end episodes with is whether
Speaker 1: it's a piece of advice, maybe it's inspiration, maybe it's
Speaker 1: a topic that we didn't get to and you're really
Speaker 1: heavy on your heart, whatever it may be. I give
Speaker 1: the floor to you and we close out our episode
Speaker 1: that way, so the floor is yours.
Speaker 2: I think one thing that I've learned throughout my experience
Speaker 2: with my son and throughout life in general with other
Speaker 2: hard things, is really what I've built the podcast on
Speaker 2: as well, is the importance of talking about or at
Speaker 2: least naming your own feelings and removing the shame from them.
Speaker 2: I think a lot of people feel a lot it's
Speaker 2: pretty cringey to be like, oh, it was the worst
Speaker 2: possible news I could receive that he would be disabled.
Speaker 2: That doesn't sound good, but it doesn't feel that great either,
Speaker 2: especially as a parent, And we were like, I love
Speaker 2: this child, and I had these feelings that were so dark,
Speaker 2: and I feel shameful about it. But I think it
Speaker 2: is so key to be able to talk about it
Speaker 2: with a trusted person, to write it out, to allow
Speaker 2: yourself to acknowledge those emotions, on those feelings, and to
Speaker 2: realize that those are very normal. I would venture to
Speaker 2: guess any kind of emotion or feeling that a parent
Speaker 2: has around their child with the disability or medical complexity,
Speaker 2: it has been There's no feeling that's not been felt
Speaker 2: by someone else before. And I think once you shine
Speaker 2: a light on those emotions by sharing with others or
Speaker 2: writing it down or just accepting it in some way,
Speaker 2: I think it makes it so it isn't in this dark,
Speaker 2: scary spot anymore. It has light on it, and it's like,
Speaker 2: you know what it is, what it is, this is
Speaker 2: this is how I experienced it, and that's okay. And
Speaker 2: so I would hope that for people that they would
Speaker 2: have a safe space to be able to express those things,
Speaker 2: or at least be able to see other people expressing them.
Speaker 2: That's one thing that again I have found to be
Speaker 2: really powerful, like with the podcast and then other ways
Speaker 2: of sharing other people talking on social media, is the
Speaker 2: power of hearing someone else talk about their story or
Speaker 2: write about it, and then to see things that you
Speaker 2: resonate with and to be like, oh, I'm not alone,
Speaker 2: and almost like seeing someone else express that can feel
Speaker 2: a kin to you expressing it and be like that
Speaker 2: feels really good to have words put to that shameful emotion.
Speaker 2: And so I would encourage parents and anyone going through
Speaker 2: something hard to find that space and the space internally
Speaker 2: to really sit with those emotions and to show a
Speaker 2: little self compassion for where you are.
Speaker 1: Yes, that was a great way for us to end.
Speaker 1: It reminds me of something I always yell at myself
Speaker 1: sometimes when I live in my shame where I don't
Speaker 1: allow myself to feel things. I'm like, feel your feelings.
Speaker 1: I just yell at myself in the mirror. I'm like,
Speaker 1: just feel it and it'll be okay. So that feels
Speaker 1: like an appropriate moment for this dude to yell at
Speaker 1: yourself in the mirror and be like, feel your feelings. Yes,
Speaker 1: for sure, Oh Madamin, thank you for joining me, Thanks
Speaker 1: for sharing your story and doing what you do. You
Speaker 1: guys can check out her podcast, The Rare Life, and
Speaker 1: I'll be sure to put her social media and stuff
Speaker 1: and here so you can follow her and reach out
Speaker 1: to her too. But thank you for your time, thanks
Speaker 1: for being here, and I really love what you're doing.
Speaker 2: Thank you so much. Has been such an honor.
Speaker 1: I'm so happy you're here each week listening to these
Speaker 1: stories and hopefully healing on your own journey by way
Speaker 1: of hearing others' potentially shared experiences. That's what this whole
Speaker 1: podcast is about. Be sure to subscribe and give the
Speaker 1: podcast five Stars I Love y'all. Talk to you next
Speaker 1: week with Sarah Todd Hammer