May 12, 2025 • 49 mins
*Part 1 of the disability series* Madeline Cheney shares her origin story & why she started The Rare Life podcast after she received troubling results at her 20-week ultrasound that pointed to a rare syndrome. She details the emotions she had throughout the entire journey and opened up about the highs and lows of having a child with disabilities and medical complexities.
Follow Madeline Cheney: @the_rare_life
Follow Morgan: @webgirlmorgan
Follow Take This Personally: @takethispersonally
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:13):
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
(00:36):
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.
(01:04):
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.
Speaker 2 (01:14):
Thanks so much for having me. I'm so excited to chat,
I know.
Speaker 1 (01:17):
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.
Speaker 2 (01:34):
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
(01:56):
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.
(02:18):
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
(02:40):
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
(03:00):
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
(03:21):
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
(03:43):
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.
(04:06):
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
(04:29):
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.
Speaker 1 (04:51):
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.
Speaker 2 (05:07):
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
(05:27):
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
(05:50):
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
(06:10):
for me to wrap my head around.
Speaker 1 (06:13):
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
(06:34):
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
(06:56):
taken away from you.
Speaker 2 (06:58):
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,
(07:19):
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
(07:39):
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
(08:00):
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.
Speaker 1 (08:14):
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?
Speaker 2 (08:22):
Yeah? I am thirty one.
Speaker 1 (08:23):
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
(08:47):
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.
Speaker 2 (08:56):
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
(09:17):
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,
(09:38):
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,
(09:59):
and are experiences with.
Speaker 1 (10:00):
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,
(10:25):
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.
Speaker 2 (10:36):
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,
(10:58):
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
(11:20):
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
(11:40):
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.
(12:02):
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,
(12:24):
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
(12:44):
safety And I feel sad about that now.
Speaker 1 (12:48):
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
(13:10):
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.
(13:32):
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.
Speaker 2 (13:48):
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.
Speaker 1 (14:07):
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
(14:30):
change as they're born and other things developed. So what
happened after he was born?
Speaker 2 (14:36):
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
(14:57):
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
(15:18):
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
(15:38):
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.
Speaker 1 (15:55):
Because you're like, okay, so what does that mean exactly?
Speaker 2 (15:59):
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
(16:20):
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
(16:41):
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.
(17:01):
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
(17:22):
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
(17:43):
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.
Speaker 1 (18:00):
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.
(18:20):
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
(18:41):
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
(19:04):
to emotionally go through so much just to get there.
Speaker 2 (19:08):
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,
(19:30):
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
(19:51):
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
(20:12):
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
(20:33):
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
(20:55):
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,
(21:18):
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
(21:39):
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
(21:59):
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.
Speaker 1 (22:15):
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
(22:36):
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
(22:56):
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
(23:17):
to happen now?
Speaker 2 (23:19):
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
(23:40):
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
(24:01):
and of itself, right, that's like its own whole thing.
So I was like, yeah, I'm maud of myself.
Speaker 1 (24:06):
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.
Speaker 2 (24:19):
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
(24:40):
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
(25:00):
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
(25:21):
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
(25:43):
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,
(26:04):
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.
(26:26):
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.
Speaker 1 (26:44):
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.
Speaker 2 (26:55):
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
(27:15):
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
(27:38):
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
(27:59):
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
(28:21):
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
(28:41):
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.
Speaker 1 (28:58):
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.
Speaker 2 (29:15):
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
(29:38):
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.
Speaker 1 (29:52):
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
(30:15):
care that goes into making sure he's allowed to have
those experiences.
Speaker 2 (30:21):
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
(30:43):
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
(31:05):
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
(31:27):
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.
(31:49):
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
(32:12):
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
(32:34):
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?
Speaker 1 (32:42):
Like?
Speaker 2 (32:43):
I really liked playing with that. Yeah, So that's been
really interesting.
Speaker 1 (32:47):
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
(33:10):
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.
Speaker 2 (33:18):
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
(33:38):
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
(34:01):
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
(34:24):
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
(34:45):
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
(35:06):
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
(35:28):
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
(35:49):
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
(36:09):
effort there is so important.
Speaker 1 (36:12):
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.
(36:35):
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.
(36:56):
And you do mention your daughter. You have two kids.
What is it like the experience for you now parenting
kids that have differences.
Speaker 2 (37:09):
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
(37:33):
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,
(37:57):
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
(38:20):
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
(38:42):
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
(39:02):
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
(39:23):
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,
(39:47):
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.
(40:08):
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
(40:31):
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
(40:51):
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.
Speaker 1 (41:04):
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
(41:26):
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.
Speaker 2 (41:38):
Thank you so much.
Speaker 1 (41:39):
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
(42:03):
course of this entire.
Speaker 2 (42:05):
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
(42:27):
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
(42:50):
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
(43:11):
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
(43:32):
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
(43:55):
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
(44:16):
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
(44:38):
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
(44:59):
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.
Speaker 1 (45:17):
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.
Speaker 2 (45:32):
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.
Speaker 1 (45:38):
Like I gotta stop my foot really hard, and don't
pity me.
Speaker 2 (45:41):
Okay, let me scream for a second.
Speaker 1 (45:44):
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
(46:07):
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
(46:29):
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.
Speaker 2 (46:39):
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
(47:01):
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
(47:22):
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
(47:43):
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.
(48:03):
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
(48:25):
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.
Speaker 1 (48:43):
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,
(49:04):
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.
Speaker 2 (49:21):
Thank you so much. Has been such an honor.
Speaker 1 (49:23):
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
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
(00:36):
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.
(01:04):
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.
Speaker 2 (01:14):
Thanks so much for having me. I'm so excited to chat,
I know.
Speaker 1 (01:17):
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.
Speaker 2 (01:34):
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
(01:56):
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.
(02:18):
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
(02:40):
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
(03:00):
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
(03:21):
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
(03:43):
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.
(04:06):
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
(04:29):
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.
Speaker 1 (04:51):
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.
Speaker 2 (05:07):
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
(05:27):
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
(05:50):
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
(06:10):
for me to wrap my head around.
Speaker 1 (06:13):
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
(06:34):
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
(06:56):
taken away from you.
Speaker 2 (06:58):
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,
(07:19):
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
(07:39):
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
(08:00):
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.
Speaker 1 (08:14):
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?
Speaker 2 (08:22):
Yeah? I am thirty one.
Speaker 1 (08:23):
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
(08:47):
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.
Speaker 2 (08:56):
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
(09:17):
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,
(09:38):
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,
(09:59):
and are experiences with.
Speaker 1 (10:00):
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,
(10:25):
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.
Speaker 2 (10:36):
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,
(10:58):
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
(11:20):
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
(11:40):
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.
(12:02):
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,
(12:24):
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
(12:44):
safety And I feel sad about that now.
Speaker 1 (12:48):
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
(13:10):
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.
(13:32):
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.
Speaker 2 (13:48):
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.
Speaker 1 (14:07):
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
(14:30):
change as they're born and other things developed. So what
happened after he was born?
Speaker 2 (14:36):
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
(14:57):
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
(15:18):
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
(15:38):
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.
Speaker 1 (15:55):
Because you're like, okay, so what does that mean exactly?
Speaker 2 (15:59):
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
(16:20):
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
(16:41):
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.
(17:01):
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
(17:22):
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
(17:43):
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.
Speaker 1 (18:00):
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.
(18:20):
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
(18:41):
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
(19:04):
to emotionally go through so much just to get there.
Speaker 2 (19:08):
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,
(19:30):
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
(19:51):
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
(20:12):
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
(20:33):
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
(20:55):
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,
(21:18):
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
(21:39):
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
(21:59):
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.
Speaker 1 (22:15):
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
(22:36):
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
(22:56):
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
(23:17):
to happen now?
Speaker 2 (23:19):
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
(23:40):
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
(24:01):
and of itself, right, that's like its own whole thing.
So I was like, yeah, I'm maud of myself.
Speaker 1 (24:06):
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.
Speaker 2 (24:19):
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
(24:40):
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
(25:00):
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
(25:21):
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
(25:43):
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,
(26:04):
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.
(26:26):
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.
Speaker 1 (26:44):
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.
Speaker 2 (26:55):
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
(27:15):
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
(27:38):
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
(27:59):
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
(28:21):
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
(28:41):
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.
Speaker 1 (28:58):
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.
Speaker 2 (29:15):
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
(29:38):
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.
Speaker 1 (29:52):
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
(30:15):
care that goes into making sure he's allowed to have
those experiences.
Speaker 2 (30:21):
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
(30:43):
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
(31:05):
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
(31:27):
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.
(31:49):
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
(32:12):
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
(32:34):
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?
Speaker 1 (32:42):
Like?
Speaker 2 (32:43):
I really liked playing with that. Yeah, So that's been
really interesting.
Speaker 1 (32:47):
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
(33:10):
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.
Speaker 2 (33:18):
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
(33:38):
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
(34:01):
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
(34:24):
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
(34:45):
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
(35:06):
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
(35:28):
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
(35:49):
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
(36:09):
effort there is so important.
Speaker 1 (36:12):
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.
(36:35):
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.
(36:56):
And you do mention your daughter. You have two kids.
What is it like the experience for you now parenting
kids that have differences.
Speaker 2 (37:09):
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
(37:33):
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,
(37:57):
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
(38:20):
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
(38:42):
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
(39:02):
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
(39:23):
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,
(39:47):
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.
(40:08):
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
(40:31):
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
(40:51):
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.
Speaker 1 (41:04):
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
(41:26):
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.
Speaker 2 (41:38):
Thank you so much.
Speaker 1 (41:39):
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
(42:03):
course of this entire.
Speaker 2 (42:05):
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
(42:27):
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
(42:50):
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
(43:11):
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
(43:32):
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
(43:55):
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
(44:16):
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
(44:38):
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
(44:59):
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.
Speaker 1 (45:17):
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.
Speaker 2 (45:32):
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.
Speaker 1 (45:38):
Like I gotta stop my foot really hard, and don't
pity me.
Speaker 2 (45:41):
Okay, let me scream for a second.
Speaker 1 (45:44):
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
(46:07):
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
(46:29):
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.
Speaker 2 (46:39):
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
(47:01):
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
(47:22):
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
(47:43):
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.
(48:03):
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
(48:25):
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.
Speaker 1 (48:43):
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,
(49:04):
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.
Speaker 2 (49:21):
Thank you so much. Has been such an honor.
Speaker 1 (49:23):
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
Host
Morgan Huelsman
Popular Podcasts
24/7 News: The Latest
The latest news in 4 minutes updated every hour, every day.
Therapy Gecko
An unlicensed lizard psychologist travels the universe talking to strangers about absolutely nothing. TO CALL THE GECKO: follow me on https://www.twitch.tv/lyleforever to get a notification for when I am taking calls. I am usually live Mondays, Wednesdays, and Fridays but lately a lot of other times too. I am a gecko.
The Joe Rogan Experience
The official podcast of comedian Joe Rogan.