Latest / Cristy M. Diaz Podcast Conversations from the Heart / Craniosynostosis with Monica Gonzalez Kronfle

Transcript

Craniosynostosis with Monica Gonzalez Kronfle · Cristy M. Diaz Podcast Conversations from the Heart

0:00
Hi everybody and welcome to another
0:02
edition of Mamas in Miami where together
0:04
we're navigating parenthood with
0:06
unwavering solidarity and fierce fierce
0:08
love of one another. I can honestly say
0:11
that I am so lucky for so many things,
0:14
but one of the biggest things I'm
0:16
blessed with is the fact that I have the
0:19
most amazing group of friends that I
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draw strength from and I have known them
0:26
for at least 30 years. Um, I am about to
0:29
invite one of my oldest oldest childhood
0:32
friends who we've been through
0:33
everything together. Uh, we call each
0:35
other Cuban cousins because I think
0:37
after 30 years of friendship, we
0:40
qualify. Um, I'm really lucky because
0:43
thanks to her friendship and my
0:45
friendship, uh, it became a family
0:47
friendship. So, I think in the Christy
0:50
dictionary book, if we were to look up
0:52
family, friends who are family, the
0:54
Gonzalez family would be the photo to my
0:56
definition today. Um, they have been
0:59
with us through thick and thin and all
1:01
of our ups and downs, and I've witnessed
1:03
her becoming this incredible mom, which
1:06
I always knew she'd be. Um, when I
1:08
started my list of potential people I
1:11
wanted to show the story with, Monica
1:14
was at the top of my list. And it makes
1:16
me laugh to think that Monica, the
1:18
minute I approached her, she goes, "What
1:19
could I possibly have to share?" And I
1:21
looked at her and I thought, "You've got
1:23
to be kidding me. You are such an
1:26
amazing mom. And your story, no matter
1:29
how little you think it is, is huge. And
1:32
the way that you have uh worked your way
1:37
out of the United States, bringing up a
1:39
family out of this country is nothing
1:41
short of why I love you as a friend.
1:43
you've done it with such grace and such
1:46
strength and I respect you so much for
1:48
it. Um I she's got three beautiful
1:51
children, Valentina, Mateo and Edmundito
1:54
and when Edmonito was born he had some
1:57
medical issues and the way that Monica
1:59
carried through those issues is a
2:02
testament to her strength today. Um I'm
2:05
not going to give more of the story cuz
2:06
I want to jump in and invite her in so
2:09
she could start sharing herself. But
2:11
right before she does, I also want to
2:13
wish her mom, my second mom, Mata
2:15
Gonzalez, a very, very happy birthday
2:17
today. Um, she's been like a second mom
2:20
to me and she's there celebrating with
2:22
Monica in Ecuador today. So, I hope
2:24
she's listening and enjoying her
2:26
birthday. Without further ado, I'm going
2:28
to go ahead and invite Monica now.
2:47
You see? Oh my god. Hi. I'm This has me
2:51
nervous. I'm like so new at this. You
2:53
should not be nervous. You're just
2:55
talking to me on FaceTime with 1,700 of
2:59
our closest friends. The funniest thing
3:02
actually just happened to me. I I
3:04
haven't mentioned this to anybody just
3:05
because I'm embarrassed. me personally.
3:08
I know for you, I want to help. I'm here
3:10
to help. Um, and a friend from Ecuador
3:13
who plays tennis with me just posted in
3:15
a tennis chat. Don't miss Monica on
3:18
Instagram live. And I was like, I just
3:20
called her. I'm like, where did you find
3:21
this and how did you find it? She's
3:24
like, it came up on my Instagram. She's
3:26
like, I'm watching. I'm like, oh my god.
3:28
Good news travels fast. Really fast.
3:31
Really fast. Well, I don't know if you
3:32
got to hear my little intro there. Apart
3:35
from wishing your mom an amazing happy
3:37
birthday, I happened to that if there
3:41
was a Christy book of dictionary and you
3:44
would look up family, friends who were
3:45
family, I think the Gonzalez family
3:47
would be the picture that I would insert
3:49
as my definition. I think I'm going to
3:52
give a disclaimer before I start all of
3:53
this. Go ahead. I've had a a lot going
3:56
on in my life and I was really strong
3:58
for a big part of it and after that I
4:00
had like post-traumatic stress and like
4:02
I cry about everything. So, like I'll
4:04
cry about like anything. So, I'm just
4:07
giving a disclaimer. Well, listen. I
4:09
have a box of Kleenex right here because
4:11
for the last couple I IG's all I do is
4:14
cry. So, I was like, I wasn't a crier
4:18
and then I all of a sudden became a
4:20
crier. You think it's it's because, you
4:22
know, we're 40 now and life experiences.
4:24
I mean, I'm just like not scared to cry
4:27
anymore and I just There you go. I I
4:29
just think it's part of it. Well, there
4:31
you go. Sometimes it's a good feeling.
4:33
We try to do this program, Monica, in
4:35
less than 30 minutes because that's
4:37
honestly, as you know very well, all the
4:39
time a mom has time for, right? We're
4:41
always ready. Okay, so here we go.
4:45
Monica, you fell in love with your high
4:48
school sweetheart. I witnessed all of
4:50
it.
4:51
Every single turn. And at what age? I
4:57
don't remember because I know that you
4:58
just did your homework and you did
5:00
yourself a little timeline. At what age
5:02
did you guys finally get engaged? How
5:04
long were you guys dating before you
5:05
married? I mean, Emold and I met in high
5:08
school. Um, we started dating in 2001
5:12
and we got married in 2010 civily that
5:16
you were at here in Ecuador. And
5:20
2011, we did our wedding in Miami. So,
5:25
we were literally together for 10 years
5:27
before getting engaged. And now we've
5:29
been married um for 13 years. And those
5:33
the 10 years of courtship were in Miami.
5:36
In and out of Miami. We went through
5:38
Miami High School. We were kids. Like I
5:41
never imagined that it would go any
5:42
further. It really it was never in my I
5:45
mean I don't know if you think about
5:46
those things ever. And um then we went
5:50
to college and we were on and off in
5:52
college. Emundo went to New Orleans and
5:54
I went to American in Washington DC and
5:59
we kind of lived through college life a
6:02
little bit. Not not not the most
6:03
traditional college life, but we had
6:05
like our things and we're on and off and
6:07
on and off and and um lived away from
6:11
each other for a long time
6:13
and kind of So you were the ultimate
6:18
Miami girl. I mean you were born in St.
6:19
Louis, Missouri. But that's just, you
6:21
know, I love to say that that's a
6:23
technical I feel like I love to add that
6:26
into like my story. Every time I meet
6:27
someone, they're like, "Where are you
6:28
from?" I'm like, "I'm from Miami, but I
6:30
was born in St. Louis, Missouri."
6:32
Because I feel like it makes me like a
6:34
little bit more American.
6:38
It differentiates you from all the other
6:41
Monica Gonzalezes in the yellow, I would
6:43
say. Exactly. All the other Cuban Monas
6:45
in Miami. Okay. So you you you lived in
6:49
Miami your whole life. You were born and
6:50
raised I mean we've been in school
6:52
together since day one. So you were born
6:53
and raised in Miami. Your typical
6:56
CubanAmerican
6:58
uh immigration story for your family.
7:00
You come to Miami. You have your two
7:02
brothers, your mom and your dad. And you
7:06
for the most part because you and I
7:07
celebrated all the Cuban heritage stuff
7:10
at school, right? Anything you can
7:12
imagine. Everything under the sun. There
7:14
was always a little Cuban flag on our on
7:15
our parents' cars, right? Yep.
7:18
So, what attracted you to Edmundo, his
7:23
Ecuadorian culture? It's very similar to
7:25
the Cuban culture. I think all Latin
7:27
cultures kind of have the same feel, if
7:30
you will, right? So, I guess it was just
7:33
very fluid and natural for you to end up
7:35
moving to Ecuador and being okay, you
7:39
know, like it it's not complete culture
7:41
shock, I would say, for you. you knew
7:43
the language. Yeah. Well, actually, what
7:45
I've learned through the time that I've
7:47
been here and through, thank God, the
7:49
group of friends that I've made that I
7:50
have an amazing group, like support
7:52
group of international friends from all
7:54
over the place. Um, and they're from
7:58
Nicaragua, El Salvador, um, Venezuela,
8:03
Miami, me, and we're from all over the
8:05
place. And I've realized that all of us
8:07
are completely different and we can be
8:09
Latin and like get along and but we have
8:12
it's it's completely different no matter
8:14
where you're from. So I hear them come
8:17
from other countries that may be worse
8:20
than Ecuador or better than Ecuador and
8:22
be like in complete shock and it doesn't
8:24
make me feel so bad. So I was like okay
8:26
I came from Miami and I came in complete
8:29
shock. Um I came in love. I was a child.
8:32
I was really a child and I came starruck
8:36
like I I I was like peaky blinders. I
8:39
had no idea of what was going on like it
8:42
was just life. It was just happening. So
8:45
they the reason why I brought up the
8:47
this subject the way I I kind of came
8:50
into your sentence was because my people
8:53
tend to think that Miami is such a um a
8:55
big melting pot of different cultures
8:58
and that when you leave Miami if you had
9:00
grown up in St. Lewis, Missouri
9:03
transplanted to Guayakil, Ecuador. I
9:05
think it would have been a bigger
9:07
culture shock for you than coming from
9:08
Miami to Ecuador. I mean, Miami
9:11
definitely helped and coming to Ecuador
9:13
and like speaking Spanish in my house
9:15
helped. But I tell people all the time,
9:17
if you ask anybody that knows me here in
9:19
Ecuador, they're like, "The queen of
9:21
Spanglish is Monica." Like there's
9:24
Spanish for me was something that we
9:26
used in our house with your grandparents
9:28
maybe like this like chopped up Spanish.
9:31
I mean they ask me nowadays like what
9:33
letter do you put asento on in Monica or
9:35
Gonzalez? And I don't know
9:38
still it wasn't part of my life. Spanish
9:42
was like a a family thing more than uh
9:47
life. I mean here like I have to like
9:50
write numbers into Google in order to
9:53
write a check out if it's like long
9:55
enough to write because those are things
9:57
that I wasn't used to doing. Um, so
10:01
still Spanish for me is still a
10:03
struggle. And it's funny because when
10:04
people see me here, like I'm still
10:06
considered like laginga and I'm Latin
10:08
and and I speak Spanish and I'm super
10:11
open to Latin culture and we have this
10:13
whole upbringing of Latin but I'm still
10:16
the
10:18
So when you got married, you moved
10:21
straight to Ecuador. Yeah. I remember
10:24
seeing your first apartment. We all went
10:26
for her civil wedding to make sure she
10:27
was going to be okay. It was fantastic.
10:30
I loved having everyone here. I can't I
10:31
I mean I love having guests all the
10:33
time, but Yeah. So So we go we kind of
10:37
Yeah. Okay, Monica. Bye. Happy trails.
10:41
Yeah. And we drop you off. And I mean,
10:45
you did a really good job, I think, of
10:46
assimilating into your community. I
10:49
mean, the other day I had an event here
10:51
at my house with a bunch of friends, and
10:52
I I really am. I'm I'm super happy. I'm
10:55
fulfilled. I have my family. I obviously
10:58
miss a ton of things, but like you learn
11:00
like I I've learned to adapt and grow
11:02
and I I can genuinely tell you that I'm
11:04
I'm happy being here. And my friends
11:06
were telling me they're like, "You like
11:08
how did you settle?" I'm like,
11:09
"Honestly, can I tell everybody that I
11:10
settled recently, like maybe three years
11:13
ago?" They're like, "What?" I'm like,
11:15
"It's not that I didn't settle before. I
11:17
just never noticed all the uncomfortable
11:20
that I was feeling until now. I don't
11:23
know if it's the 40 or the the turning
11:26
40 or or or the time that I've been here
11:29
already that now I'm like, "Wow, I was a
11:31
child. I I had no idea what was going
11:33
on. I was so lost. I was so confused. I
11:36
didn't feel it. I never felt bad or
11:39
uncomfortable. I missed much more. And I
11:42
traveled much more." And obviously
11:46
as I started um adding kids to my family
11:50
um it became harder harder to stay away
11:54
and harder to go. So it's hard. I mean
11:58
it was hard to not be there and hard to
12:01
not be able to go all the time. But um
12:04
did did assimilating into a different
12:07
country become harder when you had
12:09
babies before or at by that point were
12:13
you already kind of in a groove? No. I
12:16
think what made it easier was having
12:18
babies just because with these kids I
12:21
was becoming part of something. I was be
12:23
part of a group. I was belonging to
12:26
something that wasn't before I I moved
12:28
here. I yeah I belong to Edmundo's
12:30
family but everybody had their own lives
12:33
already happening and going and running
12:35
and like I was like added into this so I
12:39
kind of had to like create my own life
12:40
and it was hard when I didn't I wasn't
12:43
working I didn't have family and kids
12:45
and Mundo was working all day because he
12:47
was like the beginning of his job so it
12:50
was it was hard I would say um lots of
12:54
people were very kind to me and were
12:56
very caring and helped
12:59
more people that had lived out of the
13:02
Ecuador. Um, had close friends that like
13:06
would take me to the supermarket by my
13:08
hand. And for me that I'm forever
13:10
grateful. I mean, they know who they
13:11
are. They they told me that like I know
13:13
what's going to be the hardest for you,
13:15
going to the supermarket. And I was
13:16
like, what? And they're like, let me
13:18
take you. I mean, when you move to a
13:19
country where not I mean, it's the
13:22
Ecuador I live in now is completely
13:24
different to the Ecuador I lived in 10
13:26
years ago. This Ecuador has everything.
13:29
The last Ecuador I had, I know, not the
13:32
last, but when I first moved here, I
13:33
mean, I moved to a supermarket that
13:35
didn't have a single American brand that
13:37
you would recognize. Walk into a place
13:39
and not recognize anything. So, it's
13:42
like you you think it's it's like the
13:45
dumbest little thing, but you're like,
13:46
"What milk do I buy?" Like, there's no
13:49
fresh milk in Ecuador. Is that the
13:51
weirdest thing for me? Like, I never
13:53
understood that. My my my favorite
13:57
Monica anecdote when she was a mom was
14:00
that she would come with so many
14:02
luggages and I'm like what they'll do?
14:05
What are you doing? You still do. And
14:07
she's like I need to buy diapers. I go
14:10
what do you mean? She goes I don't know
14:11
the brands over there. I don't know if
14:12
they're going to fall apart. I don't
14:13
know if they're going to last me six
14:15
hours and four hours or then the
14:16
overnights the huggies the Pampers. She
14:18
goes, "I need I need to send two
14:20
luggages of of Pampers and each size
14:22
because I don't I don't know when it's
14:24
going to happen." And I kept thinking,
14:26
"Oh my god." And she goes, "Christrissy,
14:28
that's nothing. I have to boil water to
14:30
bathe my newborn." And my mind was blown
14:33
when you told me that you would have to
14:34
boil water every single time you would
14:36
bathe a child. I was the boiling the
14:38
boiling I think was more for like
14:40
heating it because in order for it to be
14:42
filtered, it had to come from cold
14:44
water. So it was cold filtered water and
14:46
then I had to boil it so it would be
14:47
hot. Yeah. I mean and and as time passed
14:51
by I I think I was young when I had my
14:53
first child and I was like very worried
14:55
about like little things and as you grew
14:57
older you you start dropping those
15:00
things I guess but the pampers for sure
15:03
formula 100%. Um ziplocks food you know
15:07
a big one for me was ziplocks a huge one
15:10
for me was like those like food pouches.
15:12
Now those things exist here, but my kids
15:14
are all past that. And um ziplocks for
15:19
me was huge. But now there's zip locks.
15:21
Tide I would bring Tide Pods. My friends
15:23
thought I was insane. Um I would bring
15:26
like the Downey like the freshener
15:28
things that you put in
15:29
like things that you would like
15:31
absolutely take for granted and not even
15:33
realize that you needed. And I probably
15:35
didn't need them. I think I created a
15:37
need for something that I never even
15:39
would have cared about. But it was
15:40
something that made me feel closer to
15:42
home or or like safer or I don't know.
15:45
Sure. I I don't think I've ever asked
15:48
you this personally, but was there ever
15:50
a time where you had a breaking point
15:51
that you're like, I need to go home. I
15:53
just need to be home. I need to be in
15:54
the US and you would just like overnight
15:56
a plane ticket and come home. Did that
15:58
Yeah. I mean, you know what? Emold's
16:00
been an amazing support to me since
16:04
forever. And he was like, "You're never
16:06
he I he never wanted me to feel like
16:08
locked up abroad." So he was like, "You
16:11
need to leave. You you go." Like, "You
16:13
figure it out. We'll figure it out."
16:15
Like, and it was that's what I said.
16:16
Like it used to be easy. So it was like
16:18
I would have those times and I still do.
16:20
And I'm like, "Okay." I like I need to
16:22
like run and like I'll make like an
16:25
escape and like I've learned to manage
16:26
it differently. before it was almost
16:27
like I would feel like suffocated like
16:30
when I was like not able to go and I was
16:32
and I always my my first years here like
16:37
when I left Miami I would always know
16:40
that I had a trip back like that was
16:42
like my safety zone like knowing like
16:44
okay like I had a new ticket already
16:47
purchased for the next time. So, it was
16:49
like kind of like a
16:52
a northern light, my northern light, my
16:55
northern star, like knowing that I I was
16:58
always going to have like that like,
17:00
okay, it's going to be two months or
17:01
three months, but I'm going You always
17:03
had a definite date of return, which now
17:06
unfortunately I can't say that you do
17:08
because when I say coming back, I don't
17:10
know. Um, now I don't know, but I've
17:12
I've learned to like live the now it's
17:15
become like more spontaneous and like
17:19
when I need to be there, I'll be there.
17:21
When my family needs me there, I'll be
17:23
there. Like I will always be there when
17:25
I need to be there. And that that gives
17:27
me like so much peace of mind. There's a
17:29
million times that my mom's always like,
17:31
"You're stuck or you're not coming. When
17:34
are you coming?" And I'm like, "I don't
17:35
know when I'm coming, but you if someone
17:37
needs me there, I will be there." Like
17:39
just recently my brothers all called me.
17:41
We had a medical meeting, family meeting
17:45
and my brothers are like you need to
17:47
come. And it was like 4 days before and
17:49
I was like okay. I I told the mund I'm
17:51
like I'm leaving in 4 days. He's like
17:53
okay. It it was like it just works like
17:55
we it's how we work now. And I I used to
17:59
need like a certain timeline. Now I kind
18:01
of like knowing that it can be whenever
18:03
I need to. Right.
18:06
Well, I'm happy to hear that because
18:09
that way, you know, you call me. You
18:11
call me, I'll be there. You call me,
18:13
I'll be there. Now, I just got to come
18:15
up with like a really good excuse. It's
18:17
got to be serious. It's got to be
18:19
serious. So, Mo, let's let's kind of
18:23
backtrack a little bit. Um, I don't want
18:25
to come too much into the future. I want
18:27
to go
18:29
back. Beautiful kids. Um, and Valentina
18:33
and Mateo were your first two. And in
18:36
Mundito was you're like, "Okay, I think
18:38
I'm going to go for a third. Let's go
18:40
for the third." And you have two
18:42
incredibly healthy number one and number
18:45
two, a boy and a girl. You roll the
18:46
dice. You go for the third. And
18:48
Mundito's born
18:50
early, not when he's supposed to because
18:54
he came earlier than we all expected.
18:56
Yeah. And why don't you go ahead and and
18:59
set that up for us? Okay. So, um, for
19:04
Valentina and Mateo, it was like easy
19:06
peasy. Like, I wanted to get pregnant.
19:08
It was like literally snap of a fingers
19:11
and I was pregnant. I was like, "Okay,
19:12
I'm going to have a baby." And it was
19:13
like to that day. Yeah. And I could have
19:15
a baby. When Mundita came around, it's
19:19
we I I guess was a little bit older and
19:21
I started getting into these like
19:22
things. I'm like, "Oh, I think I'm old.
19:23
Like, I can't get pregnant." Took us
19:25
like over a year. Um, but I was like not
19:28
stressed, but towards the end I was
19:30
like, "Okay, something's wrong." Like I
19:32
get pregnant like
19:35
immediately. We went to Miami to get
19:37
checked and the doctors were like,
19:39
"Let's give it like two more months and
19:42
then we'll see you." Because it was just
19:44
going to be a year that I had been
19:45
trying. He's like, "Let's do it a year
19:47
and then we'll talk." Lo and behold, I
19:49
got pregnant in those two months.
19:52
Um, Mundito's pregnancy was there was we
19:57
we decided from the beginning that we
19:59
didn't want to know the sex because we
20:01
had a boy and we had a girl and and here
20:03
in Ecuador it becomes like something
20:05
super like is it a boy? Is it a girl?
20:07
Everyone gets like very like anxious
20:08
because you have well because if you
20:10
don't have a boy or you don't have a
20:12
girl but we had both. So we're like
20:14
let's like not know and everybody's like
20:16
how are you going to do that? I'm like,
20:17
"No, we don't want to know." And Amund
20:19
and I were like convinced of it. It had
20:22
like
20:24
um short into my pregnancy, they like
20:27
started with like the doctors here
20:29
started like with something like there's
20:31
something wrong. There's something the
20:34
measurements aren't measuring up right.
20:36
And I like I was like, "Oh my god." So
20:39
maybe it was like I can't remember
20:42
exactly when all that happened but like
20:44
through the sonograms they were like
20:45
when they would start like measuring
20:47
they're like the stomach width which I
20:49
never knew was something important. So
20:51
like the diameter of the stomach and the
20:52
diameter of the head like weren't
20:55
matching the term that I was supposed to
20:57
be at. I was having very low amniotic
21:00
fluid a bunch of problems. So, I decided
21:02
to go to um Miami earlier than normal
21:07
and got checked there. And when I got
21:09
there, they diagnosed me with something
21:11
called inner uterine growth restriction.
21:14
Something actually pretty common. I
21:16
mean, of my friends, I know a couple
21:18
that have had it. I had never heard
21:21
about it or maybe I wasn't like aware of
21:24
it because I hadn't lived it and
21:28
nothing. They told me, "He's really
21:29
small. He's really small." on. I was
21:31
like, "Okay." And we need to check you.
21:33
And I would have sonogram checks three
21:36
times a week, Monday, Wednesday, Fridays
21:38
at a specialty clinic that would do the
21:40
measurements every Monday, Wednesday,
21:42
Friday. I mean, I don't know if you
21:44
realize like how
21:46
like it it's exhausting because every
21:49
time I went, there was something new
21:51
wrong. They're like, "Oh, he didn't
21:54
swallow." Or not he, it didn't swallow.
21:57
Or the head's the head's too big. That's
21:59
what they would tell the head's too big,
22:02
the stomach's too small, the head's too
22:04
big. Um, he didn't swallow, he didn't
22:07
breathe. And I would be there for hours,
22:09
Monday, Wednesday, Friday, every single
22:11
day for like the last two months. And
22:16
um, finally they told me, "Yes, your
22:18
amniotic fluid is really low. We think
22:22
you need to like keep them in as long as
22:25
you can for the lungs." So, I got
22:26
injected for the lungs and then they're
22:29
like, "Okay, I I don't think this is
22:30
going to go any further." I went for
22:32
like one of my last checkups and I
22:34
started I was having like some bleeding
22:37
and they said, "I think you just need to
22:38
stay now. This is like it. Like, you
22:41
can't keep pushing this." So, I at this
22:45
point I was still blinded by all this. I
22:47
wasn't like focused on like how bad
22:49
something could be or not be. I had no
22:53
idea. Like I I was kind of like I went
22:55
into I had two perfectly normal kids
22:58
C-section. I had no idea that like like
23:01
things could go wrong, right?
23:04
Um a couple years before actually we had
23:07
a
23:08
um a niece that was born with a
23:11
complicated genetic disorder and like
23:14
all these things started like replaying
23:15
in my head and I was like, "Oh my gosh,
23:17
things that you never imagined could
23:19
happen." Um, so we went in to the
23:23
C-section he was born. They're like,
23:24
"He's a baby boy. Fantastic. He weighs a
23:27
kilo 900. It was under four pounds."
23:31
Smaller than I think he's the smallest
23:34
baby from our whole group, right? I
23:37
think um Laurens I think was a little
23:39
smaller. Izzy, but which also had our
23:42
inner uterine growth restriction, right?
23:44
But but yes, Mundito was four pounds.
23:48
Like when I tell you four pounds, I
23:50
mean, I know you've had other moms on
23:51
here that like know what small babies
23:53
mean, but like you you don't imagine
23:55
what four pounds means. It's like the
23:58
tiniest little thing you can ever
23:59
imagine. Yeah. He was born. We didn't
24:03
think anything of it. Four pounds,
24:04
perfectly normal, breathing, fine. He
24:06
needs to go to NICU. I was like, "Okay,
24:08
you know what? I recovered fantastic."
24:10
It was like my easiest C-section because
24:13
I was in a hospital room and I would
24:15
visit him back and forth. I was like the
24:18
queen of breastfeeding. Tons of milk. Um
24:22
would go go feed him. Ended up being
24:25
discharged from the hospital while he
24:27
continued there. And on the day that I
24:30
on the day that I come back to the I was
24:33
had been discharged. And on the day that
24:34
I come back to get him that they were
24:37
going to let him go, they called me and
24:40
that's like when I had a breakdown. They
24:42
called me from the state of Florida to
24:44
tell me that Emmonito had tested
24:46
positive for a genetic disorder. And I
24:48
started having these like I I blanked
24:51
out. When I tell you when I blank out
24:53
completely, I was alone. And a nurse
24:55
meets me at the NICU and she's like,
24:57
"Your baby can't leave." And I was like,
24:59
"What do you mean?" And she's like, "We
25:01
called from the state of Florida." And I
25:02
I remember these words being retold to
25:05
me by my sister-in-law when she got this
25:08
call saying the state of Florida from
25:10
the heel test. I never even knew the
25:11
results of those heal tests. Like my
25:13
kids, the other two, I they heal tested
25:15
them. I never knew what it meant, what
25:18
what got tested, nothing. We had lived a
25:22
terror story with my niece, who thank
25:24
God is perfectly fine. But we lived and
25:26
and I was relisting to her voice in my
25:29
head. The state of Florida is calling.
25:30
Your baby can't leave the NICU. He
25:32
tested positive for a genetic disorder.
25:33
And I was like, what? What do you mean?
25:36
We did genetic testing before he was
25:38
born. Everything was fine. I I was clean
25:42
genetically. My husband, absolutely
25:45
clean genetically. Nothing. No genetic
25:47
disorders. My husband had some recessive
25:49
genes from Lebanon that he had some like
25:53
but no. I was like, "What do you mean?"
25:56
I It was like, you know, when like you
25:58
hear these like muffled sounds like I
26:00
couldn't hear the person was talking to
26:01
me. I couldn't hear what she was saying.
26:04
My mom comes up and the only thing I
26:06
could say is, "Oh my god, Emodito has
26:09
the same thing as Yeta." And I started
26:12
hysterically. I was like shaking. I I
26:15
called my brother-in-law who was a
26:18
support in all this because he had
26:19
lived. I called my husband. I'm
26:22
like, and it was she has um gutic
26:26
academia and called GA1. And what
26:30
Evonito had was called galactomia. But
26:34
obviously in this state of shock of
26:35
mine, the nurse said he tested positive
26:37
for galacttomia. For me it was
26:40
like guturic academia, galacttomia. I
26:43
was like, oh my god, it's in it's in the
26:46
family. Yeah. I was like, right, call my
26:49
dad who's
26:51
who's call my dad and I was like,
26:55
dad, my dad's like impossible. My dad's
26:57
like the calmst person that exists. So
27:00
chill. Imposs. He told me, "Impossible."
27:03
I go, "They just told me he has
27:06
galactosemia. Give me his liver enzyme
27:09
numbers now." So I go to the nurse. I'm
27:11
like, "I need his liver enzyme numbers."
27:13
And they tell me, he's like,
27:14
"Impossible. It's impossible." I was
27:17
like, "Well, this was like chaos.
27:20
Absolute chaos." And the worst part is
27:24
that in that moment, the hospital didn't
27:26
even know how to handle it. Like they
27:28
were completely confused. Nobody knew
27:32
what to do. The NICU nurses, my
27:34
brother-in-law, showed up with a binder
27:36
this big cuz he had studied what his
27:38
super studied what his daughter had
27:41
showed up with the milk that she had to
27:42
take because she couldn't take the same
27:43
milk that anybody else could take.
27:45
Showed up with the medication, showed up
27:47
with a binder, and he's like, "Okay,
27:48
let's get this figured out.
27:52
Long story short, they they changed the
27:54
Mundito completely off, no food, no
27:56
diet, onto IV fluids until they could
28:00
figure out what he had and how to deal
28:03
with it. They were literally going into
28:05
like medical books and like flipping
28:06
through pages. It was something like to
28:08
figure out h what do we like what's the
28:11
protocol? They didn't know
28:15
that. I I I remember like we had gone
28:18
out out to lunch, my mother-in-law, my
28:21
mom, and Mundo and we were coming to
28:23
pick up the baby. Like it was like,
28:24
"Okay, we had lunch. We're going to pick
28:25
up the baby." When my mom showed up
28:27
there and I was like pale to pass out,
28:29
she like, "What's wrong?" I'm like,
28:31
"Amito has a genetic disorder." They
28:33
were like,
28:37
"Um, long story short, because I don't
28:40
think this is the
28:42
worst. This this we got overactly. came.
28:45
This This was big. This was big. But
28:48
long story short, he couldn't drink my
28:50
milk. I had tons of milk and he couldn't
28:55
drink my milk. His his genetic disorder
28:58
was recessive that we found out with
29:00
time. This was long time of lots of
29:04
blood pricking, lots of blood drawing,
29:07
lots of doctors, right? Um and it's not
29:10
what his cousin has, his first cousin.
29:12
It's not what his cousin has. No, it is
29:15
also metabolic. So it is in the same
29:19
family but um both of them thank god
29:23
genetically um have been okay. So his
29:28
restriction was limited to just it was
29:31
limited to um things that he couldn't
29:34
eat because we later researched a bunch
29:36
and he has a thing called darte um
29:40
lactosemia which is a recessive and when
29:43
we researched further into my blood
29:45
because this dwarte is something even
29:48
weirder it's not like in the normal
29:50
genetic panel I also have darte so this
29:54
is something like like much more. Um,
29:59
it's like going into g. So, so when they
30:01
do a genetic panel on anybody, they
30:02
check for like the basics or like the
30:05
worst and then there's like all these
30:08
other like streams of it. So, that
30:11
that's what happened. So, we were stuck
30:12
in this for a whole month or two. Mund
30:15
was in the NICU for like two weeks in
30:18
all this drama. when we left the NICU
30:22
and we were like happy. Um the
30:25
pediatrician in Miami says to me, "Enjoy
30:29
your baby. Like have fun with him." I'm
30:31
like, "No." I'm like, "There's something
30:33
wrong with his head." She's like, "No,
30:35
no, no." I don't remember. She's
30:38
like, "Enjoy him. Enjoy him."
30:43
Like, and you know what? I love her to
30:46
death. And I think that the reason she
30:48
was doing that was she knew that I was
30:50
having such a hard time that she's like,
30:52
I don't think this girl can handle
30:54
something like right now. I think she
30:56
was like waiting to like find the right
30:58
time cuz we find out um within 3 months
31:05
that we I get back to Ecuador and my
31:07
pediatrician here tells me, "No, I don't
31:10
like his head. I don't like his head
31:12
shape. I don't like what's going on."
31:13
And I was like, "What?
31:16
But you know when you have that like
31:18
mother feeling that you're like
31:20
something I never liked. You did from
31:22
day one. Yeah. Yeah. And you're like it
31:25
was wrong always. Like it was always
31:27
wrong. I remember you saying to me, you
31:30
know, don't you think his head looks
31:32
kind of like a peanut? And I said, a
31:34
peanut? She go, you go, yeah, the form
31:37
of a of a peanut shell. And I kept
31:40
thinking, okay, she's lost it. I don't
31:43
see
31:45
But mom knows. So, um I was like, the
31:50
doctor here was like, "I want to do some
31:52
more testing. We need to go do like a
31:54
sonogram to make sure." I go, "But to
31:55
see you what?" Like, "I want to make
31:57
sure he doesn't have liquid in his
31:58
brain." And I was like,
32:01
"Okay, this is when I tell you like it
32:04
gets tough being here like alone." So, I
32:07
was like, "Okay." The doctor's like,
32:09
"You need to go get like a scan."
32:13
and Mondo and I didn't make it like a
32:15
huge thing. So, I was like, I went by
32:16
myself to this scan, take my baby to his
32:19
scan. They scanned his head. The
32:20
doctor's like, "I can't scan his head.
32:23
There's no opening in the suture for me
32:25
to see his brain." I'm like, "What?"
32:28
They're like, "His his skull is fused."
32:32
I was like, "What do you mean?" So,
32:36
Mito at that point, we find out his
32:39
skull is fused. And this is now now my
32:41
timeline starts because I don't remember
32:44
from 2019. January 2nd, 2019. The rest
32:47
of my year is like completely erased
32:50
from my life. I don't know if it was
32:52
like with reason.
32:54
So January 2nd, 2019, I take him to
32:57
Miami to get a CT. It's also your dad's
32:59
birthday, right? Yes. Exactly. My dad's
33:02
birthday. Okay.
33:05
He gets a CT scan done at Miami
33:07
Children's Hospital and they confirm
33:08
that his sagittal suture so the brain
33:11
the skull when kids are born that they
33:13
always tell you don't touch their head
33:14
cuz it's I can't tell you how many how
33:17
hard and how many times they touch my
33:19
child's head. So like I no longer
33:21
believe that Cuban story of
33:24
like no so his sagittal suture had
33:28
completely fused. What at what age?
33:31
Three months was it? He was he was three
33:34
months old. Three months. Yeah. Yeah. He
33:36
So his sagittal s you have sagittal and
33:40
I don't know what the other sutures are
33:41
called because his is sagittal sintosis
33:43
but his sagittal um suture had
33:46
completely fused. So yeah effectively
33:48
his head was like growing likewards
33:51
backwards cuz the head adapts to grow.
33:54
So what we take him to a CT scan in
33:56
Miami they confirm that it's um fused.
33:59
I'm sorry. I'm going to put myself to
34:00
charge cuz I think I may You know what,
34:02
Monica? I swear to God, you like read my
34:05
mind. I'm on 10% battery, too. I'm going
34:08
to go grab a
34:10
There. Okay. I'm going to grab a
34:13
charger.
34:15
This is We are so going over 30 minutes
34:18
today. Hold on.
34:20
Wait. I Let me see how I can keep you
34:26
here. Hi, Andre. I see you.
34:32
And this is the beauty of a live
34:36
chat, folks. When you It's funny. I'm
34:38
seeing people people saying hi. Well,
34:40
don't look cuz that makes you nervous. I
34:42
know. It does. It does. It does. Even
34:44
though they're they're my closest. So,
34:45
she's the bravest mom. Okay. Aa. Yeah.
34:48
You make her nervous. Go on. Is she
34:50
there? Is she there? She's there.
34:52
Everybody's
34:55
saying, "Okay, don't look. She's a mom
34:58
hero." Okay. Yeah. Don't look at your
34:59
comments. Keep going. Okay. So, January
35:01
2nd, Miami Children's, they they take a
35:03
CT scan of Well, we had to put him in
35:06
this um MRI machine. You're talking
35:09
about a three-month-old that you can't
35:10
move. He can't move. Is that Is that MRI
35:14
machine? The one that Edmonito used, is
35:18
that the one that looks like a little
35:19
tube where babies are like it? No.
35:22
They're laying down. It's like a big
35:24
donut. It's a huge donut. and they put
35:27
him in a bed and they like take him into
35:28
this thing. I get to the hospital, he's
35:31
asleep and I'm like, "Oh my god, how am
35:32
I gonna keep this child like asleep
35:35
because if not they would would have to
35:37
sleep him like because they don't put
35:39
babies through this without putting them
35:41
to sleep." And I was like, there's no
35:42
way I'm going to put anesthesia. He's
35:45
miniature. He was still not even seven
35:47
pounds at this point. Like he was still
35:49
tiny.
35:52
you know, God is big and strong and
35:54
everything, all almighty and all
35:56
powerful. And he slept and didn't move.
35:59
And as soon as it took him into this um
36:02
MRI or a CT scan, I'm not sure exactly
36:05
which one it was. He opened his eyes and
36:09
he looks up and I was like, "Oh my god,
36:12
he better not move." And he does not
36:14
move. He like stayed paralyzed. He
36:16
opened his eyes, he looked and he looked
36:18
and then they're like, "Okay, it's
36:20
done." I was like,
36:21
I like held my breath the whole time
36:24
when I like gasp for air. Um, and that's
36:29
been
36:30
his way of being since day one because
36:34
he is he is a sunshine
36:38
angel follower. He's you tell him to sit
36:42
and he sits. Well, he's getting a little
36:44
wild now. He turned six on last week,
36:47
last Wednesday. And but he is getting I
36:50
mean angel baby when he was that age for
36:54
what he went I mean he went through
36:56
every doctor you can ever imagine every
36:58
IV, every injection, every like a
37:01
trooper like a he's the strongest kid I
37:04
know by far. Now he's like learned to
37:07
get an attitude. But so that was January
37:10
2nd when we get this diagnosis. We see a
37:12
doctor in Miami who had done I think 300
37:16
of these surgeries and my dad's like
37:18
this number like doesn't sound good for
37:20
me like this is my grandson like I need
37:24
someone who's had like big experience.
37:27
So immediately, thank God my my
37:30
father-in-law Jeff is also an angel sent
37:32
to us from above. He's in loves this
37:36
medical field and started researching.
37:37
He's like, "No, we need to leave to
37:38
Boston. We need to leave to Boston and
37:41
February we leave to Boston to get
37:44
checked to see what's going on with the
37:46
Monito." They told us, "Yeah, we need to
37:48
do a surgery. The surgery is going to
37:50
take
37:51
between five and seven hours. he's going
37:55
to need need multiple blood
37:58
transfusions. They when they started
38:00
explaining I I they actually showed my
38:03
dad a video of the surgery while in our
38:07
meeting in Miami with our first doctor.
38:10
My dad stood up and like left the
38:12
appointment. I'm talking about a doctor
38:13
here. He's like a strong one too. He's
38:16
like I I can't like he's like got
38:19
queasy. I left. I I couldn't deal with
38:22
what was going to happen. The long story
38:25
short of the surgery was that they
38:28
literally opened the skin. There's two
38:32
doctors involved. There's a cranial
38:33
plastic surgeon. There's a neurosurgeon
38:36
and a cranial facial surgeon
38:40
involved. And this s they they literally
38:42
cut the skull off like cartoon. They
38:46
take it off. They reshape it. They
38:48
remold it and they reput it on. So the
38:50
baby lays there with like his skull like
38:52
exposed, his brain
38:54
exposed for seven hours. So we go to
38:57
Boston in February and they say, "Yeah,
39:00
we need to do this surgery." Um there's
39:03
a a surgery option for three months old
39:06
except he's too small. Like he's not big
39:09
enough in weight to handle the surgery.
39:12
So we need to wait till he's 9 months
39:14
old. So imagine from 3 months old to 9
39:17
months old, I knew that I had to go to
39:18
the surgery and I had to this kid had to
39:21
gain weight and like
39:22
fast. So we had him feeding like on a
39:26
constant schedule and we left Boston and
39:28
we're like okay like we knew we had a
39:30
surgery date like our surgery date was
39:32
like in June and we knew that June 11th
39:34
he needed surgery and he needed to weigh
39:36
at least I I remember it was 10 or 12
39:39
pounds. 12 pounds I think. Let's not
39:41
forget that you have two other children
39:43
at home,
39:46
which which now now I think about these
39:48
kids and I was like
39:51
today I was just thinking about they're
39:53
like struggling with a bunch of
39:55
different things and I was like they
39:57
they had all this like lack of parenting
39:59
for a whole year. That whole year for
40:03
Valentina was extremely shocking. she
40:06
was older and she demonstrated it like
40:10
she had separation anxiety. When I'm
40:12
talking about separation anxiety, she
40:13
couldn't get down off the car to go to
40:15
school. Like she would melt down. Mateo
40:19
was the opposite. Matel held it in. But
40:21
now Matel's 10 and Matel's like going
40:23
through the hardest times. And like I
40:26
look back at these things and I'm like
40:28
what they lived was insane. It gets it
40:31
gets
40:33
better. The story gets better. So, we
40:37
come back in February
40:39
um from Boston and the kids are on
40:42
vacation. So, I always spend my vacation
40:43
in Miami. And for those we go to that
40:46
don't know, the school calendar is
40:48
reversed in Ecuador. So, Monica always
40:51
comes for summer vacation. She's like,
40:53
"So, what are we doing, guys?" And I'm
40:54
like, "We're in school. We can't do
40:57
anything." Someone's on summer vacation.
40:58
I'm like dying to make plans. And it's
41:00
like no one can. Um, so you're here
41:03
February. We're here February. were in
41:06
summer vacation and my parents are like,
41:07
"Oh, you've gone through so much. Let's
41:09
go to Disney." Disney, the happiest
41:11
place on earth. I was like, "Okay, let's
41:13
go to Disney." And Mundo would fly back
41:15
and forth based on like work. Mundo
41:18
flies back to Ecuador. And I I have it
41:22
written down as Chef Mickey because like
41:24
I won't forget like I can never go back
41:25
to Chef Mickey. So, we're at Chef Mickey
41:28
on March 31st. I I just like need to
41:31
hear the numbers because it's crazy.
41:32
March 31st, I'm a chef Mickey and then
41:35
Mundo calls me. He's like, "I need to
41:37
talk to you." Like literally imagine
41:38
yourself sitting at a table with
41:40
Mickeyshaped pancakes, kids screaming,
41:42
"Mickey go do goofy Donald and Em's
41:46
like, "I need to talk to you. Go
41:47
somewhere quiet." I'm like, "Okay." So I
41:49
go and I sit by a chair like by the
41:51
bathroom and like I can see the table. I
41:54
can see my kids like this is like a
41:56
movie playing. I see my kids like
41:58
playing with Mickey and Mickey. I see my
42:00
dad looking at me and my mom looking at
42:01
me and I'm like, "What happened?" He's
42:04
like, "I'm coming to Miami tomorrow." I
42:06
was like, "What do you mean?" He's like,
42:08
"They found something in me in my" And
42:12
what do you mean they found something? I
42:14
I went to like a sonogram of my testicle
42:16
and they found something. I was like,
42:18
like this is like first notice. And I'm
42:21
like, "What do you mean something?" He's
42:23
like, "Yeah, like a cyst or something?"
42:26
I was like a assist or something or a
42:28
cis or something more and he's like like
42:31
was like stuttering like he was like um
42:34
it's like I don't know but they told me
42:36
that it's better if I leave to Miami. I
42:39
was like
42:40
uh I was like in complete shock complete
42:44
shock. I remember sitting there and I go
42:47
and I go like like assist like cancer
42:50
and he's like
42:52
um I'm not sure
42:55
at that moment. Do you think he didn't
42:57
want to say the word cancer cuz you were
42:59
at Disney and he didn't want to scare
43:00
you or was he just It didn't come out of
43:02
his mouth. And I get in the car with my
43:05
dad and I and I see my dad and I'm like
43:09
you knew. And he's like yeah. I was
43:13
like, you knew like I was I mean at this
43:18
point like this is something now for my
43:20
life that's like become like the most
43:21
traumatic thing because if you ever have
43:25
anything in your life, you need to tell
43:27
people like for me like I can't believe
43:29
I did. My dad knew he drove to Disney
43:32
and he knew that there were something
43:34
going on and he told and my dad your mom
43:36
I'm sure of course. So, they both knew
43:40
and I'm sitting at Disney riding roller
43:41
coasters while my husband's by himself
43:43
in Ecuador going through
43:46
this. They send me and they say to me,
43:50
um, my dad says to me something that he
43:53
always says. He's like, it's not cancer
43:55
until it's cancer. And I'm
43:57
like, this was March March 31st and
44:01
Mundo arrived and believe it or April
44:04
4th he was in surgery. Okay. April 4th,
44:08
he was going into surgery. For the
44:10
record, Marta G29, your mother, just
44:13
wrote, "I did not.
44:18
I I I'll debatable. Debatable. We'll
44:22
leave that one up to
44:24
Oh, debatable. But April 4th, he was It
44:27
was fast. It was so fast. You March
44:30
31st, you're in Disney. You're the
44:32
first, you're in Miami. the fourth. He's
44:33
he had already seen um a urologist and
44:37
he was going straight into surgery the
44:38
next day. Went into surgery um did the
44:43
biopsy. They ended up removing the
44:45
testicle because it was bigger than they
44:47
thought. There was two tumors involved
44:50
which is something even weirder. One
44:52
tumor was bad. The other tumor wasn't.
44:56
April 4th he was in surgery. April 14th
44:58
we were in
45:00
Houston. like 10 days later I was flying
45:03
to Houston. Imagine my kids at this
45:04
point. Still were in summer vacation. So
45:06
they're still like in Miami at but we
45:09
were completely lost. I had a newborn
45:13
baby and Mundo was going through this.
45:16
Leave the baby fly to Houston. We get to
45:20
Houston there. It was obviously it was
45:22
diagnosed as testicular cancer. It was
45:24
caught in time, but they said it was
45:26
aggressive enough because he had two
45:28
tumors that he did need chemotherapy.
45:31
The good news that they gave us was, you
45:32
know what, he can do chemotherapy
45:34
anywhere that you're comfortable. What
45:36
we recommend for you is to be
45:37
comfortable because at this point, the
45:39
medicine is all the same. You just need
45:41
to be comfortable.
45:44
So, he starts chemo May 12th, a month
45:47
later. He does chemo for about a month.
45:50
He rang the bell I have here on the 28th
45:53
of May, but um he still did a couple
45:55
more sessions after that. The 28th of
45:58
May, Emundo rings the bell for cancer.
46:01
Still has hair at this point. And June
46:04
9th, we're flying to Boston for a
46:05
momentto surgery. I know Emo didn't know
46:09
if he was going to be able to get on a
46:10
plane. Like when masks were never used,
46:12
our household was using masks. Like we
46:15
were all using masks and Mundo was
46:16
flying in like a weirdo wearing a mask.
46:19
loses all his hair between May 28th and
46:21
June 9th loses his hair and we fly to
46:25
Boston to Edmonito's
46:28
surgery and at that point my mom who was
46:31
watching was not allowed to the surgery
46:34
we took my dad who was the doctor we had
46:36
a huge support team which was family
46:38
which was incredible and I know that my
46:41
mom's a super strong woman for a care
46:45
but I knew that during the surgery and
46:47
all that time for her was going to be
46:50
the worst. She's like, "You don't want
46:51
me there." I'm like, "The real truth is
46:53
no. I rather you come after and help me
46:55
when like when the going gets tough."
46:59
Yeah. Right. Um, so Emodito had a 7-hour
47:05
surgery. I remember the worst feeling a
47:09
mother can ever feel. This is when the
47:11
tears come, is giving your baby up for a
47:16
surgery that you don't know how he's
47:17
going to come out
47:20
of. I had to do the
47:24
waterworks. It was a sevenhour surgery
47:27
that didn't matter what family member
47:29
was there. I didn't want to see anybody.
47:32
Like I sat by myself on a floor because
47:35
I didn't want to see anybody. I just
47:37
wanted to be
47:40
alone for hours and hours just
47:45
waiting. It was the longest seven hours.
47:49
I And we've all been at each other's
47:51
waiting rooms when our babies have been
47:53
born. We've all been at every single
47:56
moment in our lives. But those were the
47:59
longest seven hours I've ever
48:01
experienced.
48:04
So the doctors come out one at a time
48:07
because one finishes his job first and
48:10
he's like sees my husband with a shaved
48:13
head takes us into like a private like
48:15
parent room. Emmund and I weren't even
48:17
together even like he was like pacing
48:20
the halls. I was sitting on the floor
48:23
like crunched by like the doors were
48:26
open the doctor to come out of just
48:28
waiting for the doctor to come out and
48:30
we had like 10 of Amundo's family
48:33
members in the hospital which was very
48:36
relieving for times but like at this
48:38
moment I like I just didn't want
48:46
to give you a
48:48
space and the doctor pulls us into a
48:51
room and he sees a Mundo with a shaved
48:53
head and he says to him, "That's
48:59
so we're losing you. We We're losing
49:03
you." That you said that's so nice that
49:04
you shaved your head in solidarity, but
49:07
yeah.
49:08
So nice. And goes actually finished
49:10
chemo last week. Like the doctor almost
49:14
pllopped over and died. Like he's like
49:17
couldn't believe it. He's like, "Do you
49:20
keep losing me?" Sorry.
49:23
Yeah. I keep getting this call. I don't
49:24
I don't know how to do do supposed to
49:26
put like do not disturb or something.
49:28
But that's okay. Oh, okay.
49:31
It Monica, when you first saw Mito come
49:35
out of that surgery, can you share with
49:38
everybody how many stitches he had in
49:40
his head? When I first saw Mondito, and
49:43
I I'll share pictures for you to like
49:45
see. Um, he was in a complete helmet. It
49:50
It was like a helmet. Like it was like
49:54
gauze all gauzed up, a little helmet.
49:57
And all you could see was like this
49:58
little round face. And it was like the
50:00
cutest little fat cheeks because he was
50:03
they they put him face down for surgery.
50:05
So they're very swollen. And it was like
50:08
this little fat face. And he still
50:11
smiled. He woke up and he smiled like
50:15
this kid never stopped smiling. I don't
50:19
even remember him
50:22
crying.
50:23
Um, he goes into surgery on the 11th.
50:26
It's a night.
50:35
You hear me? Yeah, I can hear you. A
50:37
night in the NICU, my dad told me, "You
50:40
know what? I'm gonna stay. I want to
50:43
stay. I don't want you to stay. And my
50:46
dad's like, and I'm like, why? How are
50:47
you gonna stay? There was no in the
50:48
NICU. There's no in this intensive.
50:51
There's no It was a private NICU room,
50:54
but there's there's no bed. There's no
50:56
nothing. It's like there's like a little
50:57
bench. My dad's like, "It doesn't
50:59
matter. I'm going to stay
51:01
here." And he's like, "You know what,
51:03
Monica? You need to go and rest." And
51:05
that was like the best decision I could
51:07
have made. My dad's like, "You don't
51:08
know how to make a decision. if they
51:09
tell you you need to make a blood
51:10
transfusion in the middle of the night,
51:11
you're going to freak out. He's like, I
51:13
can make that decision. And I was like,
51:17
true, true. Like, I didn't know how I
51:19
was going to handle it. And effectively,
51:21
he had a blood transfusion in the middle
51:22
of the night, had had blood transfusions
51:24
throughout the surgery, and had to have
51:26
another one in the night. And from that
51:30
day on, then they release them to a
51:31
normal room. It's the fastest thing
51:33
ever. You should see how they treat
51:35
kids. I mean, at Boston Children, these
51:38
nurse, everybody's amazing, but they
51:41
they treat it like nothing. I was
51:43
freaking out. They would take off this
51:45
helmet off of his head. He had over 200
51:48
stitches in a zigzag pattern, completely
51:51
shaped and a zigzag all over his head
51:54
with over 200 stitches. And that day, my
51:56
mom calls me who was taking care of the
51:58
other two kids. She's like, "Monica,
52:00
don't worry. I don't want you to worry."
52:02
But she's like, "I'm in the emergency
52:03
room with Mateo because he cracked his
52:05
head open." And I was like, I was like,
52:08
"Okay." I was like, "It's okay." She's
52:10
like, "You're not worried?" I'm like,
52:11
"You're talking seven stitches. I'm
52:14
sitting here with 200 stitches." I'm
52:15
like, "I think we can I think it'll be
52:18
it'll be fine. Fine. It'll be fine.
52:20
We'll be okay." And
52:23
um they left his head completely
52:26
uncovered with these 200 stitches, which
52:28
was you become so immune to it. I I I
52:31
was I didn't even notice it anymore. And
52:34
he had the worst part of it all had this
52:36
like drain tube that came out from the
52:38
back of his neck right here. And it was
52:40
a tube of blood that hung on this little
52:43
little drain tube and you would have to
52:45
like empty it out during the day. And
52:47
that drain tube went through his head.
52:49
You could see it in his skull like all
52:50
the way to the top here. So you could
52:52
see it like underneath his skin. It was
52:54
like disturbing.
52:57
And the last night that I stayed in the
52:58
hospital, one of Mundo's cousins,
53:01
who's a a soldier trooper, strongest,
53:05
stronger than me, she is stronger, said
53:08
to me, "I want to stay with you." I go,
53:09
"How do you There's nowhere to sleep
53:11
here." I said, "There was a chair and a
53:12
bench." She's like, "It doesn't matter.
53:14
We won't sleep. We'll just talk through
53:15
the night. Let's like talk about stuff."
53:17
And we talked and talked until like we'd
53:19
doze off and talk. And I said, "Don't do
53:22
this." this. I'm like, you She has five
53:23
kids and and multiple situations in her
53:27
family. One of her kids is completely
53:32
disabled and she's like, "No, I'm going
53:33
to stay with you cuz you need me here."
53:36
And I was like,
53:37
"Okay, thank you." She she's also an
53:40
angel and she stayed with me. And 7:00
53:42
a.m. the doctor or 6:00 a.m. the doctors
53:43
come in. They're like, "We're going to
53:44
pull out his drain tube now." And I was
53:46
like, "Um, they're like, "You just hold
53:48
them and we'll pull it." And I was like,
53:50
I like went into shock and Chaba was
53:53
there with me and she said to me,
53:54
"You're you can do this. Like, you can
53:57
do this." And I was like, "Okay." I held
53:59
him. They pulled this thing like out of
54:03
him. Left this huge hole here. They put
54:06
a patch on it with like newsboard and
54:08
they're like, "Okay, you're ready to go
54:09
home." And I was like, "What?" I was
54:13
like, "No, please don't send me home." I
54:15
was like, "Anything but send me home."
54:17
I'm like, "I'd rather stay here as long
54:19
as you need me, but I'm not." and and
54:20
the head and I said this was like bloody
54:23
and Frankenstein like it was like
54:28
Frankenstein I go and how do I wash it
54:30
they're like you just go home and you
54:31
just wash
54:34
it so we continued and I I I this we
54:40
left the hospital and believe it or not
54:42
we're walking through the streets of B
54:44
they're like we want you to live a
54:45
normal life just go you're done like
54:48
that's it like go be free and I was
54:51
like I would carry this baby and Amundo
54:53
would carry him because he was like
54:54
already a bigger and like a baby bajour
54:56
with like his head and this like huge
54:58
skull. You would never imagine how
55:00
people stare at you. Like people would
55:05
ask, "What happened to your baby?" Like
55:07
you would I was in shock of like all the
55:09
things that we like live through. People
55:10
are like, "Look at them." They're like,
55:11
"Oh my god, look at what happened." And
55:13
it was like, "Oh my god." Like I can't
55:16
even imagine. I felt so much sympathy
55:18
and empathy for like the people that
55:20
live this like permanently and live
55:23
these lives.
55:26
But anyways, um and I I think we
55:30
survived great time to say that there
55:32
are cases where they do catch this too
55:36
late and yes and and was miraculously
55:42
one of those that we caught it in time
55:44
and he's going to live a full healthy
55:46
and happy life. He is a fantastic
55:51
smart
55:53
sunshine,
55:55
energetic, steals the
55:57
show. He has this energetic pool to him
56:01
that like only he could have. And I'm
56:05
super grateful. I mean, he he has a
56:08
special light that shines only on
56:10
him. And he's lucky. He's he's lucky.
56:14
We're lucky. We're happy. and his dad
56:16
today is
56:19
fantastic and doing fabulous. We're all
56:22
doing fantastic and Mundo's been already
56:24
in remission um for a while. No other
56:28
scares or anything. And it was just it
56:31
was a whirlwind, but we sur we made it.
56:34
Survived. We survived. So now we've been
56:38
talking I would say for a good 55
56:40
minutes when I think back to the day
56:44
that I called you and I said hey I have
56:46
another crazy idea. I'm going to start a
56:49
podcast and and I said and I want you to
56:51
talk on it and you said what could I
56:53
possibly have to
56:55
say? No it's not I mean I knew I had
56:59
stuff to say. I just didn't I mean I
57:01
feel like I see these stories. You have
57:04
these extraordinary stories on your
57:06
podcast and I hear these people and I'm
57:10
humbled and and I I don't know if I
57:12
minimize what I live through because I
57:15
completely blocked it out. I completely
57:18
blocked it out. So I was I was on like
57:22
fight or flight. I fought and I fought
57:25
and I fought until it like ended it and
57:28
then it like I was like okay alt control
57:31
delete never happened like move on and
57:36
we moved on and you we all moved on. You
57:39
exper you went through that entire year
57:41
with so much strength. Monica
57:45
it wasn't my strength. It was definitely
57:47
like a higher being. It was something
57:49
stronger that carried me. I I I think I
57:51
I didn't shed a tear in a year. Like I
57:55
mean Emundo would wake up I would take
57:58
him to cancer to chemotherapy and we
58:00
didn't talk a lot about that and I I'm
58:02
not going to get into it but he had
58:04
chemo every single day and we would have
58:06
infusions that were over 12 hours a day
58:09
every single day for three weeks and
58:11
going through it every single day. And I
58:13
can't even say it because I know that
58:15
there's cancer patients that go through
58:16
10 times more. But it was every single
58:19
day and I would wake up every morning
58:21
and he told me and I never I never asked
58:23
them like how do are you okay? No, it
58:26
was like go. It was like I'm going to
58:28
wake up. We got to go. Let's go. We go.
58:30
We go. Come back. Go to bed. Shower
58:32
clean. Don't you think it's God's
58:35
senidence that very early on you had all
58:40
this milk but you couldn't give it to
58:41
your child and he had to drink something
58:43
else because 3 months later you were
58:45
going to be sitting in a hospital for 12
58:47
hours a day not being able to breastfeed
58:49
your child. I mean actually I I I hadn't
58:53
seen that but absolutely I mean it would
58:55
have been like terrible for me to like
58:58
be toring apart but like I sat through
59:00
hospital hours on end like I I lived in
59:04
hospitals for a year and and you are
59:08
here to tell the story. Yeah. And and
59:10
and happy and healthy and grateful. What
59:15
to close out today because your mom is
59:18
turning 70 and I'm sure you guys are on
59:20
your way about to
59:21
celebrate lunch. We're gonna have
59:23
dinner.
59:24
What would you tell the Monica of 2018?
59:29
You know what, Chrissy? I swear I'd look
59:31
back and I don't want to sound like
59:32
cliche. I wouldn't change a thing. It
59:35
was like it was what was meant to be at
59:38
the moment that had to happen. Now, I w
59:42
wish, you know, the only thing I wish
59:44
was that I would have maybe helped my
59:47
other kids at that moment that they saw
59:50
their dad without hair and they saw
59:52
their dad with cancer and they saw their
59:54
baby brother in a NICU through like they
59:56
never met their brother. They met him
59:58
through a glass. He wasn't even allowed
1:00:01
into
1:00:02
um the nu. I wish I would have like been
1:00:06
smarter and more prepared for them. like
1:00:08
I feel like maybe they had some like
1:00:10
scarring from it, but you know what? We
1:00:13
try our best. Is there any support
1:00:16
groups or um Facebook groups, Instagram
1:00:20
groups that you can recommend for
1:00:22
children experiencing this? I I didn't I
1:00:25
the cranioinostosis I had never heard of
1:00:28
anybody who had it and like everything
1:00:31
in life as soon as I was in Boston, you
1:00:34
don't know people started calling me. I
1:00:36
the day Mundito came out of surgery, my
1:00:39
sister-in-law called me. She's like, "I
1:00:41
know it's a crazy day, but you think you
1:00:42
can talk to a friend of mine. I think
1:00:45
she's going through the same thing." And
1:00:47
believe it or not, absolutely was going
1:00:49
through the same thing. Ended up with
1:00:51
the same exact doctors and operated a
1:00:52
month later. And not only her, four
1:00:55
other people that immediately like I was
1:00:58
like, "This is so insane." Like you come
1:01:00
into this world with not even knowing
1:01:02
that this exists and then all sudden you
1:01:05
have all these kids and you're going to
1:01:08
see that this platform that we have
1:01:10
started is exactly for that. We are a
1:01:13
village of open to help anybody who's
1:01:15
ever going through it. I know it's
1:01:17
definitely it sounds crazy and the
1:01:20
doctors say it to you. It's something so
1:01:22
hard so hard in the moment that you do
1:01:24
it, but as soon as it like you pass
1:01:27
through it, it's over. Like it's done. I
1:01:30
mean, isn't it Monito's head like
1:01:32
absolutely the most normal shape? No.
1:01:34
No. I still think he's maybe like a
1:01:36
little mango Filipino but his his brain
1:01:40
is functioning which is the most
1:01:42
important thing for all of us that we
1:01:44
were scared that you know like in this
1:01:46
case like the the problem the side
1:01:48
effects are that they have like brain
1:01:50
issues because the skull doesn't let the
1:01:52
brain grow and for me there's nothing
1:01:56
else to be asking for. There you go.
1:01:59
Well, you guys all heard it here. Like I
1:02:01
was saying, we are a village of just
1:02:04
moms trying to get through life. It does
1:02:06
take a village to raise our kids. You're
1:02:08
going to see Monica now that people are
1:02:10
going to start just coming out of the
1:02:12
woodworks. And I'm so grateful that
1:02:14
you're going to be there to offer your
1:02:17
support and love and knowledge. Um
1:02:20
that's that's what this is all about.
1:02:22
We're we're The only thing I can say is
1:02:24
all these moms, being a mom makes you
1:02:26
stronger than you can ever imagine.
1:02:28
Well, so whoever thinks that they that
1:02:30
they can't live through something or
1:02:32
you're not going to make it through you,
1:02:34
it's in you just being a mom. There you
1:02:37
go. That's all the time we have for
1:02:39
Thank you guys all for staying a little
1:02:42
extra today to hear from our south of
1:02:45
the equator girl. We can't wait to hear.
1:02:47
And anybody who comes to Ecuador, please
1:02:49
let me know. I always want I always want
1:02:51
company. Well, careful what you wish
1:02:54
for. I love it. I love it. And I love
1:02:57
having company. I have a guest room
1:02:58
that's always open. Monica will will be
1:03:00
coming back at some point in time soon
1:03:03
because I want her to tell everybody how
1:03:06
amazing it is to travel to Gopagos. Oh,
1:03:09
I'm happy. Let's go. Let's do it. I
1:03:11
think we should do that one live
1:03:12
together. You here? Just tell me when.
1:03:15
We got it. June 2025. Yep. There you go.
1:03:18
You guys heard it here first. Our
1:03:20
husbands, I hope they're ready because
1:03:21
it is happening June 2025 whether they
1:03:24
like it or not. You guys, we want you
1:03:26
here. Sounds good. Everybody, keep that
1:03:29
coffee strong, the sanity intact, and
1:03:31
everybody kiss those babies heads a
1:03:33
little harder tonight. Love you guys.
1:03:35
Thank you. Thank you.