Can you imagine the strength and resilience it would take to endure a 29-hour labour and then face the hardships of trying to conceive a second child? These are the realities Nicole Smith had to grapple with, along with the even more challenging experience of raising a child diagnosed with Cerebral Palsy.
Nicole is a dedicated advocate for human dignity. She has a background in Law and Public Policy and a successful career in Communications. In 2020, Nicole faced a life-altering experience when her daughter was born distressed and diagnosed with cerebral palsy. This intensely personal journey ignited her passion for advocating for her daughter's values and motivated her to raise her voice for those often marginalized.
Her story is a stark window into the realities of NICU care, parenting a child requiring constant medical attention and trying to balance time and affection between multiple children. Through it all, Nicole's story underlines the importance of maintaining a positive outlook and a supportive community.
Nicole opens up about the emotional turmoil she endured as she navigated through her daughter's diagnosis and the challenges it brought with it. The daily life she lived of having to feed her daughter with a pump 24/7, closely monitor her breathing, and the continuous medical attention her daughter required. She teaches us the importance of grieving unmet expectations, taking moments to feel overwhelmed, and the power of sign language as a mode of communication for nonverbal people.
Nicole talks about her emotional exhaustion and the importance of having a supportive tribe in the healing process. This episode is a testament to a mother's strength, love, and resilience in adversity.
Driven by her personal experiences and desire to promote human dignity, Nicole founded Dignity Defense Institute, a non-profit organization.
Let's enjoy her story.
To connect with Nicole: https://www.linkedin.com/in/nicolemysmith/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Daniela SM (00:08):
Hi, I'm Daniela.
Welcome to my podcast, becauseeveryone has a story, the place
to give ordinary people, stories, the chance to be shared and
preserved.
Our stories become the languageof connections.
Let's enjoy it, connect andrelate, because everyone has a
story.
Welcome my guest, Nicole Smith.
(00:35):
Nicole is a dedicated advocatefor human dignity.
She has a background in law andpublic policy and a successful
career in communication and,most importantly, she is a wife
and a mom of two beautifuldaughters.
Nicole, in this story, opens upabout the emotional turmoil she
endures as she navigatesthrough her youngest daughter's
(00:58):
diagnosis and the challenges hebrought with it.
She emphasizes the importanceof grieving and managing
expectations, while talkingabout the significance of having
a supportive drive during thehealing process and emotional
exhaustion.
Can you imagine the strengthand resilience it will take to
(01:18):
endure a 29 hour labor with thefirst child and then face the
hardship of trying to conceive asecond child, along with the
even more challenging experienceof raising her second child,
diagnosed with cerebral palsy?
This episode is a testament toa mother's strength, love and
(01:39):
resilience in adversity, and Ilearn a lot thanks to her story.
I am grateful for that.
So let's enjoy Nicole's story.
Welcome, Nicole, to the podcast.
Oh, thank you so much forhaving me on.
Yes, I'm excited that you'rehere.
I really was dying for you tocome to the podcast and then,
when we have an initialconversation, I was fascinated
(01:59):
by all the things that happenedto you, so I am happy that
you're here.
Besides that, I ask you toplease come to the podcast.
Just tell me why do you want toshare a story?
Nicole Smith (02:10):
Well, twofold, I would say one for an empowering
measure for someone else goingthrough a similar circumstance,
and then two, an awareness ofwhat can happen throughout our
story.
That becomes a little bit moreapparent.
But those are really the tworeasons, so that people know
that they're not alone in ourmaternity.
(02:31):
It's very difficult, but whenyou have special needs situation
, that's kind of next level, alife experience.
So an encouragement as well asjust an awareness.
Daniela SM (02:42):
Yes, and I appreciate that because it's
true, people don't talk enoughabout that.
I mean, I do believe thateverybody has their own
experience, so you can hearmillions of advice, but
everybody goes through thedifferent things, but you're
always good to hear others.
Nicole Smith (02:57):
Ours is a unique enough story that there still
are a lot of people out therethat have gone through something
similar just an awareness andempowerment.
Daniela SM (03:05):
Yes, and I know that what you told me before is
quite incredible.
When does the story start?
Nicole Smith (03:11):
Well, I like to start the story entry into my
maternal story.
So I was about almost 30 yearsold when I gave birth to my
first daughter.
I really say I just reallydidn't understand what strength
meant until I gave birth to ahuman person.
It's pretty wild.
I had a 29-hour labor with herand, unmedicated, pushed hard
(03:31):
enough where I burst almostevery blood vessel in my face.
I got up an hour later and I'mwalking around and going, wow,
like this is so powerful.
I know that not everybodychooses that path, but I just
thought, well, if I can do it, Iwill, if not, I won't.
And I couldn't believe I gotthrough this really massive show
(03:53):
of strength.
I kind of say it was likeentering into a world of Oz
where everything was black andwhite before, and then entering
into a world of Technicolor.
I just and I know that soundsexaggerated, but really it was
this idea that how strong that Iwas as a woman, that I could do
this really phenomenal thing,and that really anything else I
(04:14):
did, I could say, if I didn'tsucceed from my perspective of
what success looked like, atleast I had this, I was powerful
and it was very an impactfulstory and moment for my life.
So about a year into my firstdaughter's life, we decided we
wanted another one and wethought, well, this is going to
be just as powerful andwonderful of an experience.
(04:37):
And it turned out to be a muchdifferent experience than the
first.
So I started to experience aphysical ailment that would
allow me to.
Well, I was in immense amountof pain 24 seven for three years
straight.
I was tied to my fertility andthat kind of stuff.
So I wasn't able to conceive achild for a long time.
(05:01):
Once I was starting to findsolutions to it, I then I
started having a lot ofmiscarriages.
It took me about three years toconceive my second daughter and
that was also very impactful.
We were very grateful, veryscared, like pregnancy wasn't
all that complicated, I wasn'tconsidered high risk.
This was coming into COVID.
That world made things a lotmore complicated than it ever
(05:24):
should have been At that time.
If anybody is really aware of,in the medical realm, what it
meant to be pregnant during thattime was, you know, telehealth
visits, parking garage examswhich I just felt so bad for the
nurses and the doctors at thistime, you know, not able to work
in a clean and properenvironment, everything was just
(05:45):
such a weird, weird time.
Daniela SM (05:47):
But I mean you said you feel bad for the doctors
and nurses.
What about you?
I mean I don't think that oneexpects to be checked from that.
You know private areas in theparking lot.
Nicole Smith (05:58):
Yes, yeah, well, yeah to to like go in behind
these little screens, and thatwas part of our story too.
I actually didn't have all ofmy tests and stuff done in time
for me to go into labor, so a 27hour labor.
I was touched very few timesbecause they didn't want to
introduce an infection into oursystem that would affect me or
(06:19):
the baby.
I would be checked at around 27hours when they were starting
to realize that my daughter wasin distress.
The nurse had been coming inand out every once in a while
telling me like hey, roll overon your side, okay, fine, I'm
like, okay, just labor and along.
Finally she comes back in theroom with a physician and the
doctor says you know, look, Iknow we haven't checked you, but
(06:42):
I feel like it's reallyimportant that we check you now.
I was like, okay, she reachesher hand up in there and I don't
have an epidural understand.
So what occurs in the next,like 10, 15 minutes was all I
feel, everything.
She goes yep, oh, my gosh, you,we have a prolapse cord.
All these alarms start goingoff.
20, 30 medical professionalsrushed into the room.
(07:03):
I have no idea what a prolapsecord is, I just know clearly
this is bad.
So the doctor jumps on thegurney with me, the nurse jumps
on the gurney with me.
I'm looking around, an absoluteterror, what's happening?
My husband's like okay, justlike two seconds ago we were
quiet and now everybody'srushing to the room.
They're screaming to cover meup because I clearly very
(07:25):
exposed and we're about to gointo public areas.
When you're in labor, you knowyou're like modesty goes out the
window.
But I was kept thinking of that.
Poor dad in the lobby was justtrying to get a cup of ice for
his wife.
That's the woman being used asa human ventriloquist puppet
because her arm was still upinside me, trying to keep the
(07:47):
baby off of the cord.
So a prolapse cord, just forreference, is when the cord
comes out and advances the babyand it gets pinched off, so the
oxygen flow is cut off.
Essentially it meant that mydaughter was suffocating to
death.
You know, has her hand up there, keeping the baby as much off
the cord as she possibly can.
They run me into the OR asquickly as possible.
(08:10):
They put the mask on me and I'mbreathing, but at this point,
like everybody's, like pullingmy limbs every which way they're
shoving catheters in me.
Remember I can feel every inchof everything that's happening
to me.
I remember just like startingto ask everyone what their name
and their job was, because Ineeded something to ground
myself.
Like what is happening, gettingall these names, and one
(08:32):
anesthesiologist sort of takespity on me.
She sees this single littletear run down my face, like what
is going on.
She goes you know I can tellyou're really overwhelmed.
You know we do this every day,honey, like you're going to be
okay.
And I was like but I don't havean epidural.
What are you going to do?
Are you going to rip her out ofme?
She said no, dear, you're goingto be put under general.
(08:54):
So, which means you get knockedout.
Within like 10 seconds afterthat sentence I was out like
light and when I woke up, I wokeup in recovery.
The issue with having noepidural and going into general
means that you come outimmediately feeling everything.
So you feel that you've beencut open.
(09:14):
There's nothing to like stemthe tide of the pain.
They started putting me onnarcotic pump immediately, but
it's kind of like you're chasingthe pain and you never quite
meet up with it.
So I don't deal the well onnarcotic at all.
So I was loopy, I was cryingand begging my husband to tell
(09:36):
me where the baby was and whathappened, just totally out of my
mind, had no clue what wasgoing on.
I guess we were there for aboutthree hours and they never
brought the baby back.
We kept waiting and of coursemy husband has more solid
grounding and time than I did atthat time because I'm just out
of my mind.
Finally, after about three,three and a half hours, they
(09:59):
bring her back to me and theyacted like everything was
totally normal.
They bring us into laborrecovery Almost immediately.
We started noticing somethingvery wrong, but it would take
them four days to take itseriously.
Daniela SM (10:15):
With my daughter.
Nicole Smith (10:17):
With me.
Obviously I was in an immenseamount of pain.
I felt everything.
The pain medication never quitecaught up to it.
Every time I moved it was likebeing torn in half.
It was excruciating.
Remember, I gave birth to yourchild before 29 hour of labor.
I felt really intense painbefore, but this was like next
(10:37):
level I've never really quiteexperienced.
The first few days we started tonotice things like her eyes
used to roll back full whites inthe back of her head and she
used to oscillate like she washaving these massive seizures.
That's when she was awake, butshe was rarely awake.
She was often really asleep andnewborn sleep a lot but her.
It was kind of almost likeimpossible to wake her up.
(10:58):
Then she couldn't actuallylatch when I was trying to nurse
her or suck, swallow none of it.
She didn't eat for quite a fewdays.
The response to the emergencywas great, but the doctors
afterwards it was incrediblyfrustrating experience.
Our nurse kept going.
Well, she has to drink X amountof milk at a time.
They weren't giving me anyresources, that were just
(11:21):
desperate to try to get her toeat.
The doctor would say we couldgo home and then they said that
we had to stay and then we couldgo, and then they say that we
had to stay.
It was just these crazy backand forth every half day.
When they finally made thedecision that something really
was wrong, they weren't aware ofwhat it was, or at least they
wouldn't tell me what it was.
(11:41):
I remember very distinctly thisis COVID time, so there's like
coffee is very hard to come bybreakfast sandwich.
That's not like hospital.
My poor sweet husband was likeI'm going to find you like a
solid cup of coffee At this time.
They had taken my daughter awayto do some testing, so I was
(12:02):
totally unaware it was happening.
I was just scared.
So he left.
And then, sure enough, likethis massive team of doctors
came in and it was like theprimary physician that we had
been working with, severalneurologists and this other lady
that had been standing in theback of the room for a long time
.
They never told me who she was.
So they kept going throughthese lines questioning, and I'm
(12:22):
like my husband's not here, I'mkind of freaking out.
And finally they point out thelady and she kind of comes
forward and gingerly tells usthat we're not going home, that
we're going to go into intensiveNICU for extensive testing to
find out what happened.
My husband comes back in theroom coffee's in hand, like what
is happening?
(12:43):
I'm like I don't know.
We're not going to be able togo home.
Also, nicu meant that myhusband wasn't allowed to stay
with us.
He was allowed to walk us toour room, but then he had to
leave the hospital promptly.
One very important detail atthis time in our journey was
that I stopped taking allmedication whatsoever because I
(13:03):
was afraid of giving any type ofnarcotic or any strong
medication in my breast milk toher.
To make the hyperlithargy worse, I was at this point just cold
turkey.
The reality of high intensiveNICU is that you don't have a
bed to lay down in.
What you do is this tiny, veryfull room of all the medical
equipment you could possiblyimagine and a tiny little seat
(13:25):
in the corner.
That is where you stay.
Then at night, around sixo'clock, your name has been put
into a raffle.
This raffle is you're drawn tosee if you're allowed to get a
hotel room.
I say that very, very loosely.
It's just a room with amattress on top of a box I'm
(13:45):
literally meaning a box with oneblanket on it.
You get to stay there until thenext morning around eight
o'clock You're told to removeyour things and then you have to
go back to that tiny littleseat in the corner.
Daniela SM (13:59):
It's not a hotel room, it's just a room.
Nicole Smith (14:01):
Yeah, they call it like a hotel.
It's supposed to be set up likeone.
It's not.
Having not been on painmedication, it was very
difficult to sit in that cornerall day and not really have much
relief.
Of course you're just terrifiedof what's happened to your
child.
They're not really telling youvery much.
They have this long list ofthings they're testing for.
(14:24):
I asked one very nice NICUnurse please write down all the
tests you're doing and for whatpurpose you're doing them.
She did.
She took the time, wrote outevery test and for what purpose
it was.
I was able to check it off.
My routine was I stayed in theroom until about 10, 11 o'clock
at night with her.
I'd take a break around eightto go shower and then come back.
(14:46):
There was always a neurologistthat would do his rounds around
that time.
Then I'd wake up and I would doit again.
I get there around 6.37 becausethere's another neurologist
that did pre-rounds and I had mylittle system.
I could just guide the process.
Then, after about a week wewere transferred to long-term
care, which then you're allowedto have a little bed in the
(15:08):
corner like a seat roll out seat.
We were there for about a month.
They never, like I said.
They didn't tell me until I waseavesdropped on a nurse
transition.
They'll do patient debrief,like their medical history.
Holding my hands next to thedoor, pretending to do something
productive, I'm listening tothe nurses say that she had been
(15:29):
resuscitated at birth.
I had no clue.
My husband hadn't been there soobviously he didn't know.
I wasn't awake for it so Ididn't know.
I guess she had totally stoppedbreathing.
What confirmed that she hadactually been resuscitated at
birth was an insurance bill, ahospital bill that said $746 for
(15:52):
resuscitation and newborninfant.
Daniela SM (15:54):
Then you have to pay or I had to pay that.
Nicole Smith (15:57):
Oh yes, some of it had been come off from
insurance, but that was a lineitem in the billing system.
That that's how I found out shehad been resuscitated at birth.
Daniela SM (16:10):
When you were sitting in the room and you go
by lottery if you were going togo to sleep or not.
So if you didn't get to thatroom, where did you go?
Nicole Smith (16:17):
You're home, a hotel next door if you don't
live close by, or you can sit inthe chair if you'd like.
Daniela SM (16:25):
Oh, so you get to go home.
Nicole Smith (16:26):
Yes, you could go home.
Yeah, honestly, it was actuallyreally sad, especially in
intensive NICU.
These children that have beenthere for a really long time and
their parents live in otherstates and have other children
and jobs they have to maintain.
A lot of the kiddos are alone.
Sometimes it's neglect to.
Unfortunately, these kids don'talways get the care they need
(16:48):
from their support systems.
You could tell the familiesthat were really a lot like us.
Eventually I was able to startchanging out with my husband.
We had COVID rules.
You had to be there for Xamount of days and then you
could switch out with someoneelse so I could go home and
actually sleep in a bed.
After a few weeks I started tonotice certain families did the
(17:09):
same thing, like the husbandwould come and tend and then
switch every few days with themom.
There was a couple moms like methat were pumping and sending
their milk in to make sure thatthey were supplied.
But I had one of these cleaningladies.
Just sweet, sweet lady told mehow grateful she was to us for
always making sure our daughterhad someone to love her and take
(17:30):
care of her, because too oftenshe goes into rooms and these
children have no one to holdthem or to love on them.
Daniela SM (17:37):
Wow, that's so sad.
Nicole Smith (17:39):
Yeah, I had to routinely walk around NICU both
my husband and I when any day wewere there and look in the
rooms and just pray over eachchild for their health and their
well-being in there, because weknew actually a couple of our
friends prior to the situationhad lost their babies.
We knew what a blessing it wasthat we were here and I know it
(18:01):
was hard to see that as ablessing in the moment, but it
was so easy that she could havedied the day she was born and we
know what it had felt like towalk through those moments with
our friends having to bury theirbabies, that it was something
that we should be grateful for,to pray that blessing over
(18:21):
others in the same situation.
Daniela SM (18:23):
But that's beautiful, because you were
focusing on the positive ratherthan the negative.
Nicole Smith (18:28):
Yeah, which, like I said, not easy.
There was a lot of moments ofbitterness.
That's totally normal Part ofher cares and I'll bring back to
that.
That journey of bitterness andwhat I call opportunities for
grief are really, reallyimportant.
So she was there for a month.
She was never able to self feedso we had to get a gastric tube
(18:50):
inserted, which is theypuncture a wound through their
abdomen, attach their stomach tothe abdomen wall and put a
little tube in through theirstomach wall.
So it totally bypassed heresophagus because milk was just
going straight into her lungs.
Pneumonia, death that'sbasically the alternative.
Once we finally got thatinserted, we were cleared to
(19:11):
leave.
All the medical stuff became mystuff.
It's in a nurse doing it, itwas me doing it and I don't have
a medical background.
I struggled with it a lot.
She had to be fed by a pump 24,seven, basically, like at night
she would be hooked up to amilk pump and it would pump into
her system and we had to get upevery so hours to refill those
(19:32):
things.
She had to be monitored to makesure she was continuing to
breathe and not aspirating andthose kinds of things.
She stopped breathing a lot.
That was a very normal dailyoccurrence where she would just
stop breathing, turn purple blueand then I'd have to shake the
life back into her, basicallyover and over and over again.
It's very common where peopleare like my kid choked on a
(19:54):
piece of chicken that one time.
That it's scary, scary, butthat was literally my everyday.
A lot of that bitterness cameup because there's just so much
fear and uncertainty that gotthrough this really hard thing.
You're thinking you're on theother side of it and every day
just brought another level oftrauma, day after day after day.
It was hard to handle and again, I don't have a medical
(20:17):
background but, as I am tounderstand, even if you are a
doctor or nurse, if this happensto your kid, it's still
difficult.
It's hard to handle that as areality.
Of course, yeah, there's oftenthis thing that is spoken over
parents in a similar situationIn mine, my daughter was 100%
normal until we had an accident.
(20:39):
It's more seen like an accidentin that which she is 100% not
normal anymore.
So her diagnosis is calledcerebral palsy, which is
essentially ischemic braindamage that comes from a lack of
oxygen that affects musclecontrol, and muscle control can
be anything every muscle on thebody, including the esophagus,
your ability to swallow, yourability to talk, your ability to
(21:01):
walk, your ability to anything,because we actually have
muscles that do a lot ofdifferent functions that we just
don't really think about.
There's a lot of question markswith cerebral palsy.
Every person that has thistotally difference.
I remember getting this poemspoken over us a lot.
I guess it's very common forfamilies that have children with
disabilities and it's this ideathat you planned a trip to
(21:21):
France and you ended up landingin Denmark.
So you have the expectations ofFrance the sights, the sounds,
the food, that experience iswhat you have your expectations
on.
But when you land in Denmark,it's still beautiful, it still
has wonderful food and wonderful.
It's just slower and it's justa different world, different
(21:42):
experience that should be seenas beautiful, just as beautiful
and in a lot of ways that's verytrue.
I don't think that I appreciatedthat poem being spoken over me
as much as they were.
People were just kind of likeyou should be grateful, be
grateful, your baby is alive,your baby is breathing, and I
was just like I am grateful.
(22:04):
I'm so grateful, but I'm sobitter because I have to be
grateful because there's breathin her lungs when it's so easily
not in her lungs, because thatwas my daily reality.
It was just hard to tell people.
I don't think you understandwhat we're going through.
I know what your intentions are, good and pure, and you want to
encourage me because our lifeis beautiful, but it's really
(22:27):
hard.
It is, like I said, going backto encouragement to families
going through this, I wouldreally encourage you to take
those moments in which you feeloverwhelmed and you want to cry,
to cry, to sink into thosemoments that make you feel
overwhelmed, because those areopportunities to grieve, because
(22:48):
you need to grieve that you didend up in Denmark instead of
France.
It's okay that yourexpectations weren't met and
really what we're grieving isunmet expectations.
That's really what it is.
Daniela SM (23:02):
I feel like when people tell you you should be
grateful, it's more sympathythan empathy, because they are
telling you there that youshould be grateful for what you
have.
Yes, okay, but why can't I nothave more?
Why can't I not expect more?
Why can't I not feel better?
Nicole Smith (23:16):
You'd want that, but it can't be something that
keeps you in that cycle of griefLike grief is very important
and it's something that's ahealing mechanism that you're
supposed to sink into and tobring you relief and growth out
of that To not let people tellyou what your journey is
supposed to look like, becauseit is a journey.
(23:36):
I have other friends withchildren with cerebral palsy and
one of my really close friends.
Their birth story is verysimilar.
Hers was tied to a medicalevent in the womb and so hers is
a much more severe version ofour daughter's cerebral palsy.
She's 16, so my daughter'sthree Definitely different parts
of the journey because they'vehad many more years to get used
(23:59):
to, to heal, to adapt, to seethis new reality that they're in
as something that's deeplybeautiful and purposeful and
impactful.
But the mom she says she getsso upset about people posting
pictures of their vacationsbecause their daughter's in a
wheelchair and she can't go tothe beach and she can't do
certain things.
And it just reminded me howmuch this is a journey and
(24:22):
there's certain things that justlike sort of hit your heart in
weird ways.
It just depends on the personyou know.
Like we were saying, it's veryunique experience.
I remember when we were in NICUthe nurses do this wonderful,
very sweet thing where they makethese beautiful signs with your
daughter or son's name and theydecorate the doors of your the
(24:43):
NICU room.
And I was so mad about it notat them, but I was very upset
because it meant that she wasgoing to be there for a long
time.
When they moved her to adifferent crib, from her
original crib to a differentcrib, I got very upset with that
too, because it meant she wasgoing to be there for a long
time.
That now that bed was needingto be used for a child that was
(25:06):
newer, my husband kept going.
You know, nick, like this is agood thing.
You know you should see this.
I'm like I just can't see itlike that.
I just didn't want to see itlike that.
And again it's.
You have to grieve throughthose moments and sink into
those feelings, you know,recognize the source of that
discomfort and then do somethingwith it, don't just sit in it
(25:27):
forever.
But yeah, it was just funny, myhusband, he had different
things that will sort of triggerthose hard moments for him.
You know he's like I don't evenget why that's upsetting to you
.
I'm like it just is to me.
For one reason or another.
It's been an interestingjourney.
Daniela SM (25:41):
But it's interesting that you talk about
grieving, because you know wealways talk about grieving when
somebody dies, there is, likeyou said, when you don't have
your expectations.
Grieving is a word that you canuse.
You know in more regular raceshow to deal with that, because
you do have those feelings, asyou have some feelings that
upset you, what your husbanddidn't have, other ones and we
(26:04):
all different things, differentthings affect us, right, and
it's important that we kind ofacknowledge and respect it and
honor it and then, of course,get the proper tools to move
away from that, because youdon't want to be in a negative
spot, absolutely yeah, butthat's the difficult, that's the
work, yeah, yeah.
Nicole Smith (26:24):
I mean, this has been my life saying for really
ever expectations of the deathof joy.
You know, interpersonalrelationships often become
tumultuous when someone doesn'tmeet our expectations, and so
realigning our expectations towhat that person is able to
accomplish makes things muchable to accomplish joy in those
(26:45):
relationships.
I've just noticed thatthroughout my life, like with
our children too, you know, ifthey're health journey, she
didn't meet our expectations.
We thought that life would go adifferent way and our
expectations weren't met.
Something else came out of thatthat was not easy to find joy
in.
But when we realign ourexpectations to what our
(27:06):
children are capable ofproducing for us, like our
daughter, we fully expected tonever eat on our own or ever
speak or to ever walk, to stopcomparing her to another child
that can speak and eat and walk,because she will never meet our
expectations if we keepcomparing them to other
desirable outcomes.
(27:26):
And that way you can celebratethe things that are about her.
And I do that with my otherdaughter too.
You know I tried very hard tolook at her because she's her
own sassy little self to go.
Sometimes it's my expectationthat I'm placing on her that
she's not acting within theproper order of what I believe
is right.
Sometimes she's just her, andso just trying to keep that and
(27:50):
infiltrate all parts of my life,that reality that sometimes my
life's expectations won't be met, but it still doesn't mean that
it won't be joyful, it won't bepurposeful and it won't be
loving.
My life with my girls, my lifewith my youngest daughter,
absolutely is.
It's transcendent joy.
I'll say it that way.
(28:10):
I, going back to my friend thathas a child that's similar to
mine, he said you know, we haveour lows are really low, but our
highs are really high.
And I think it's true.
It's like they don't have tomeet our expectations, they can
just be the fact that they liveand our breathing is just a
beautiful, wonderful thing andwe get to celebrate that and I
(28:31):
get to advocate for her and findjoy and pursuit of making her
life the best life she possiblycan have.
It's been a hard journey butit's been a beautiful one that I
would like to encourage otherpeople in and also to again
going back to awareness.
Awareness this things canhappen Awareness of families
going through something similarand maybe to choose different
(28:54):
words when they're encouragingthose families no, you can't
speak in empathy, but somethingthat, in sympathy, is to just do
life with them.
Don't try to fill it with words.
Maybe just ask them what theyneed.
Like us, going through this andCOVID meant that nobody could
bring us food, nobody couldclean our house, nobody could do
really much of anything for ourfamily.
(29:16):
As time passes, people forgetthat you're still going through
a really hard time.
So maybe a friend is two, three, four, five, 10, 20 years into
it.
Remember they're still goingdown that path.
They're still on a journey.
Bring them a meal or offer totake their other kids to the
park for a while, or see peoplein their journey and try your
(29:38):
best to empathize and be presentwith them.
Daniela SM (29:41):
Yes, this is something that we are not told
right, I will feel awkward, Idon't know what to say.
I will feel awkward to tell youanything about my kids because
it could be all happy.
And then I don't want you makeyou feel bad and I guess you
also walk away from your regularfriends because they really
don't understand, or you don'twant them to feel comfortable,
(30:04):
or they don't want to feeluncomfortable.
So how was that journey too?
Nicole Smith (30:09):
Yeah, actually that's a wonderful question.
So I did have a season that Ikept trying to pursue.
People try to plan things andbecause I felt so alone Again,
probably COVID made it worsePeople just kept not showing up,
and not showing up, and notshowing up.
It was hard to continue to berejected, felt rejected every
(30:30):
time that they had somethingelse that was scheduled conflict
, and I know they probablydidn't mean anything by it.
But I finally got to the pointwhere I just had to cut off
energy output for those things.
That couldn't be a two-waystreet.
My hope was, too, was to buildenough stronger relationships
around individuals that could bea part of our journey, so I
didn't have to always explainwhat was happening.
(30:52):
Sometimes that's hard becausewe go out in public and my
daughter is nonverbal and shewalks in a walker.
People are constantly askingwhat's wrong with her.
Nothing's wrong with her, likeshe's just her, and sometimes
I'm okay with those questions.
Sometimes I'm just tired ofanswering those questions.
I was trying to build a tribethat I didn't have to explain it
(31:14):
anymore.
We could show up, our kidswould play together the way they
could.
I didn't have to explainanything anymore and in some
ways I did build thoserelationships.
Their kids are typical kids andwe can show up and we can play
and they celebrate her victoriesand they pray over her
challenges and those have beengreat.
And then I just sort of cut offall of the other ones.
(31:36):
That was just too hard to getthem to understand where we were
and then to treat the questionsthat people had outwardly as
opportunities to educate.
And it's mostly kids.
They're like hey, mom, why shegot wheels?
Or confusion over why shedoesn't verbally respond.
But she does ASL, american SignLanguage that she understands
(31:58):
what you're saying.
So speak to her just likenormal.
I might translate for you.
But to speak like she's anormal person because she
totally understands what you'resaying, don't expect her to
answer normally.
You know those sorts of things.
It's been interesting tonavigate those pathways.
Daniela SM (32:13):
I mean, I don't think I will have asked the
question because I think it'simpolite.
You telling the story, you aremaking people aware of something
that they don't know.
Right, yeah, they see somebodyelse or they see her.
They know what the story is.
The question is more what'syour story rather than what's
wrong with you.
Nicole Smith (32:30):
Yeah, what's wrong with that kid?
It's kind of fun to make peoplerealize to sign language is not
just for someone who is deaf orhard of hearing.
That's been one of the biggesteducation points we've had,
because the assumption is thereare nonverbal people that you
use sign language as theirprimary mode of communication
(32:52):
and you know she's a stronglittle girl.
It doesn't make sense why shewould have to be supported in
the way she is.
But she has a balanced disorderso she stands independently.
She just flops right over.
Daniela SM (33:05):
She's three and she's great at sign language
already.
Yeah, that's pretty good, she'samazing.
Nicole Smith (33:09):
Actually it's very common, like with her age,
to do what they call augmentedcommunication.
It's like a little iPad orpictures that they can point to
you to tell what they need.
Well, I started doing signlanguage with her really really
young, because I realized hercomprehension was really really
high.
She understood what was goingon.
Cognitive capability she wasalways like a year ahead of as
(33:32):
she tested.
She was always like a yearahead of her age.
So, around one year old, shescreamed all the time because
she was frustrated, because shewanted to tell you what she
wanted, but she wasn't able totell you what she wanted.
Everybody does like a little bitof sign language with their
kids before they can speak and Iwas like, okay, well, why don't
I just learn it and we'll justlearn it together?
(33:54):
And so now she can form smallsentences like a three year old
would.
It's helped a lot.
She still screams a lot ascompared to another child.
It's easier to go like make aloud noise to get my attention
and then to look at me, that forme to look at her so she can
tell me what she wants.
We don't have to yell.
I always say we use our handwords.
(34:15):
You know no yelling, don't yellat me.
Daniela SM (34:18):
But she can hear.
Okay, so she knows that she'sscreaming.
Yeah, oh, she does.
Nicole Smith (34:23):
Well and that's the weird thing is too, we'll be
in public and I verballytranslate whatever I'm signing
in my in words, because mostlyit's an encouragement for one to
teach her, but also toencourage her to use her words,
because somebody else isspeaking to her that way,
because she can hear.
So people are kind of like theywatch us for a while and then
(34:44):
they ask can she hear?
I'm like yes, you're just fine,it's just she.
Her muscle control in her mouthmakes it.
Where she can't actually formwords in order to speak, her
vocal cords work just fine.
It's the muscles that controlthem that are the problem.
Daniela SM (35:00):
So yeah, well, I mean, she's three and that's
difficult times anyway, so itwould take some time.
Can we go back to theexpectations point?
I seem, from your backgroundand your job, what you used to
do on a note, you still do it.
You probably have always haveexpectations for yourself.
(35:20):
How do you learn to perhapslower them?
Or which sounds negativealready?
So how do you better work,direct them, change them, modify
them?
Nicole Smith (35:31):
I love that question Like that's one of the
best ones.
I think a lot of times too inthis process it's so much
centric towards your child andmeeting their needs that
sometimes you forget you're partof this process too is giving
myself more grace.
I still do that work.
I'm still do human rights work.
I've learned to try to build alife in which I can create
(35:54):
almost like silos a bit, so thatI can step to the side and be
something fully, so that I don'tget too much cross
contamination.
I get overwhelmed and then Istart losing all ability to
organize anything and I willfail understanding that
something will fall through thecracks.
Like the other day Iaccidentally my daughter turned
(36:17):
eight my oldest and I got theparty time wrong.
I put it down for one and itwas 11.
And so 45 minutes into theparty I get a call from the
company like where are you?
And I was like okay, everybodyrun, run.
You know, like simple thingslike that, like and I cried.
And I cried and cried because Ifelt like I wasn't being a good
(36:37):
enough mom to my oldest,because everything goes into my
youngest and this one thing Iwas supposed to get right so
that she felt special andimportant.
Thankfully, all the moms were sosweet, you know.
They ran, we had the party andthen we went back to our house
and ate pizza.
It was fine, but I rememberhaving that like sitting in that
moment going reduceexpectations for perfection for
(36:58):
myself.
I will fail.
I will do something to not meetmy family's expectations,
because I'm a person and I'mhuman and I'm my worst critic
when it comes to that.
I'm never supposed to letanything drop and for as many
places I have spinning, it'sokay that some will drop and
some will break.
I can pick myself back up andit'll be okay, you know.
Daniela SM (37:23):
And we build these expectations because we can do
it.
We have done it, we can do more, so we added it is interesting
what you said, and it's alsointeresting what you said about
your daughter and feelingfrustrated.
It happens Somebody else istaking more time of you than the
other and you want to be fair,and fairness I guess it's not
the word anymore, it's moreequity.
You know you take the time thatyou need for everyone instead
(37:44):
of equality.
Nicole Smith (37:45):
I've noticed a challenge.
My oldest daughter has alwayshad very defined views around
what she believes how the worldshould work.
Because there's a five year gapin them a lot of the times it's
hard for her to comprehend that.
We did a lot of these samethings with her early on.
She's old enough now that she'slike hey, you know, you're like
spending a lot of time with herand I go well, I take about 30%
(38:11):
, let's.
It's like a normal baby.
It's a lot of work just to doyoung children.
Of course.
She just doesn't recognize itbecause she doesn't remember
that we did all those thingswith her too.
So she always says, well, younever, and you never do this
with us.
And I was like, look, and itwas kind of like training her in
in expectations as well.
So you're placing a lot ofexpectations on mommy and daddy
(38:32):
and the season that we're goingto fail to meet them,
unfortunately and it's it's notintentional, it's just that a
lot of this time is taken up bythe medical needs.
I want you to express thoseexpectations and let's talk
through them so that we don'tcontinue to have bad feelings
around us not meeting them.
Daniela SM (38:52):
Oh, that's a beautiful conversation.
Nicole Smith (38:54):
Oh man, it's, and it's been, it's been a thing.
Part of my daughter's conditionis that she wakes up a lot
throughout the night, so Ihaven't slept in like forever.
You know shorter fuses withthat, so just verbalizing like
look, mommy hasn't slept in likelike years.
Some days are worse than others.
I'm trying to walk her through,aligning expectations and
(39:17):
giving grace to, because she sheneeds to learn that as well.
Earlier on the better, I think.
Daniela SM (39:23):
Yes, yeah, that's true.
I have a story from somebodywho also he works on managing
expectations and he works reallyhard on that.
He written a book and alsowriting a course.
Nicole Smith (39:34):
Yeah, yeah yeah, well, and to express meeting
those expectations isn't atransference of love.
My oldest has a hard timerecognizing an equity in love
Like that.
Like there's only, like a likephysical space in your heart
that is dedicated to each hersmust be so much bigger because
she's getting so much more ofyour time.
(39:55):
No, like, that's not how thatgoes.
You know it's.
You know, of course, you knowshe's younger, so there's more
time anyway.
But yeah, we love you equally.
It's just you have differentneeds that need to be met and
just trying to be purposeful atthe time that we do give her to
make sure that she does knowlike, hey, you know we're boring
into you specifically and yourneeds and that kind of stuff,
and we know over time it won'tbe as bad.
It's just she has a lot ofextra needs, are youngest right
(40:19):
now.
That will get through and inthe grand scheme of their life
won't be such an intense amountof time spent where it's just
like my oldest is forgotten.
But yeah, it's, it's hard.
Daniela SM (40:30):
She will know that you have done the best you could
.
Yeah, yeah, you work on humanrights and here we are, you
advocating for your daughter.
It feels like you are having adouble purpose with your
profession now.
Nicole Smith (40:42):
Yeah, I say that my mission was given flesh and
blood when she was born.
I grew up in a home that wasvery service centric, so when I
grew up I ended up on thecommunication side of global
human rights.
I helped a lot of people inother countries that I never got
to hug or touch or tell themthat they were important and
(41:04):
loved and special enough forpeople to show up and serve them
because they were importantjust because they were human.
You know no conditions right?
There's a struggle in thatbecause I don't get to
physically tell them thosethings where when my daughter
was born, I felt that physicalconnection obviously, where I
got to tell her those things Ididn't get to tell that child
bride in Uganda or that sexslave in Afghanistan that I was
(41:26):
advocating for it's.
It's been wonderful to seethose things come full circle
and it's become just a moreenriching journey, even in the
professional side.
Daniela SM (41:35):
Yes, she's three.
But apart from that, when shegrows older, would you have more
time to sleep?
Will you have more time foryourself Things?
Nicole Smith (41:44):
change a little bit, I think.
So, yeah, it will.
So the thing with her and again, cp is so different.
If you get early intervention,things can really improve pretty
rapidly.
If, depending on the person,right, you know early on we
thought you know she'll never doout any of these things.
We have really pushed very hardfor that early intervention.
When the neuroplasticity isreally high, when the brain can
(42:06):
adapt.
It's looking like my daughterwill walk.
It will look like she will talk.
She will get through thesethings.
It's just a matter of when.
It could be 10 years from now,I don't know.
It could be 20 years from now,I don't know.
Or it could be five, I don'tknow.
So you just have to take onestep at a time and realize that
work on the front end willincrease quality of life for her
(42:28):
in the long run.
If we try to push it back anddo it older, your
neuroplasticity goes down as youget older, like your brain has
a harder time to adapt.
Really where we're at, we'rejust like we're trying to find
those pathways.
Like you will walk, you willtalk.
We will just pour into you asmuch as we can and the hope we
can all sleep one day.
Daniela SM (42:50):
And Nicole, what about the relationship between
you and your husband?
Nicole Smith (42:54):
It was a struggle .
I'll be very honest.
My husband, he went through areally hard time about a year
ago.
We're just really kind ofdigging into his mental health,
his physical health, all of thatsort of stuff, to try to come
out on the other side and Iwould say it was really bad for
a good year in there.
(43:15):
But now we're coming on theother side of it.
I think the divorce rate forfamilies like in our situation
is ridiculously high and it'smostly men that will initiate
the divorce in the instance ofinfant trauma.
Oh really, yeah, I mean, whenyou go through this it's really
hard and in general like myhusband not really including his
(43:36):
own trauma from when he was achild just in general it's
really stressful.
The relationships tend to breakdown because there's just a
breakdown in communication overjust everybody being in such a
bad space.
I mean, I remember having quitea few arguments about just
silly things where he would saythings like I thought you were
(43:56):
past this, like it was somethingthat I was struggling with,
with the reality of what we'rein.
How are you past it?
Of course you're not past it.
He's just trying to emotionallyput it under the rug, right?
So being very purposeful withcoming to the forefront with how
you're your feelings aboutstuff, and it was important we
(44:18):
got stronger in our relationship.
Daniela SM (44:19):
I feel like oh, and what about shame?
I mean, I'm sure that he'sthere.
Nicole Smith (44:24):
Yeah, that actually was a big part of our
early journey because there wasa lot of what-ifs like what if
we had done something different?
The birth process it's sodifferent, depending on every
single birth, but so manyvariables were so different than
my first one because of thefact that it was COVID and
nothing was normal.
But I had a deep amount ofshame concerning some of the
(44:46):
choices during that birthingprocess, like I should have
known.
Of course I wouldn't know, butmaybe I should have taken some
advice differently or I shouldhave.
Really, there's any momentslike these.
There's always something thatyou could have done different,
and so it took me a while tojust come to terms with.
Things were just going to turnout the way that they were.
(45:08):
I'm just going to have to beokay with that.
I can't be angry at thesituation anymore and I can't be
angry at myself anymore for howthings turned out, because it's
hard to watch your childstruggle from something that
could have been different,prevented.
But I'm not a physician.
I wouldn't have known.
Daniela SM (45:24):
And your family, your relatives, your mother,
your father.
How did they handle it?
Nicole Smith (45:29):
I always find it so interesting.
The way people respond totrauma is so unique.
My mother for a year wouldn'thardly touch my daughter because
she was afraid of hurting her.
It's hard to feed a child witha gastric tube.
It's just, it's very unnerving.
You're hooking up to a pumpthat might get clogged and where
we started feeding withsyringes and she stopped
(45:52):
breathing all the time, likewhen she was really young.
She just stopped breathingevery few minutes, like it was
really frequent.
Her response was just to nottouch her at all.
So one day I think she was likea year, year and a half was
like mom, your granddaughterneeds to be fed.
If you don't feed her, she willnot be fed.
And so she was like you'reawful, nicole.
(46:15):
I was like, look, if I go intothe hospital or my husband goes,
like somebody has to be abackstop here, you know, and you
guys live the closest you'regoing to have to get over it.
And my dad was very similar,like he used to be a paramedic
and he still wouldn't touch her.
He was just so afraid ofhurting her.
Yeah, oh, wow.
And my dad's response wasdenial for a while.
It's just an over exaggeratedresponse to nothing.
(46:40):
He's like he wanted it to be,that my mother-in-law just never
slept.
She was just terrified all thetime that she was going to die.
My father-in-law was like she'sgoing to be perfect and fine
and like he just had hispredictions.
Yeah, and it's just likeinteresting to like watch
people's response to what Icalled the hurt baby, and
(47:00):
everybody came to a rescue insome way that they felt like
they could.
You know sister in laws,brother in laws, aunts, uncles.
You know their own response,the way they knew.
I found it to be a sweetprocess to watch, you know,
sometimes frustrating, but whenI looked at it like, this is how
they're processing whathappened, coming to terms with
it, and I felt it as more of abeautiful thing than it was like
(47:25):
with my mom, where I'd getreally frustrated.
Like mom, you got to get overit.
Like I had to.
People say like trauma and badthings happen to people that are
strong enough to take care ofit.
I don't think that's true atall.
I think that you respond to itand you can either run towards
it or run away from it.
Running towards it, it means alot of hardships and a lot of
ways, but, man, you get so muchstronger.
(47:47):
It's like I would never changeit for the world, like if it
meant that she was dead.
If I could get the otheralternative in that situation, I
would take this any day of theweek.
She's alive, she is her bestself.
Would I wish this on her if Icould avoid it altogether?
No one, every parent, wouldever wish this on their child.
Of course not.
But if I had to choose betweentwo scenarios of it happening
(48:10):
dead or alive I choose alive andI choose fighting for and I
become stronger and moreresilient and more grateful and
more just, better.
I feel like my heart is morefull because of it.
Daniela SM (48:26):
And you're tired, more tired.
Nicole Smith (48:28):
Oh, so much more tired and I'd encourage people
to get that tribe thatunderstands.
I kind of go back to thatfriend that has a daughter
that's older.
It was so nice for him tounderstand that when you show up
to something, you're alreadyexhausted, he gets it.
It's like that tribe thatunderstands that you don't have
(48:49):
to explain what's happened, allthe things that are invisible to
everyone else.
They get to just see this righthere.
She's smiling, she seems happyand well adjusted, but there's a
lot of stuff behind the scenesthat doesn't get to be seen
Sometimes.
I'm grateful for that, becausewe don't always want to show our
(49:10):
grittier side.
Other times I wish people could, because they could understand
a little bit more what goes intomaking the person that's
standing in front of them.
There's so many things that arehidden.
Daniela SM (49:23):
And you know, I understand what you said about
staying with a tribe, because Ithink, in a way, we always want
to be with people that our brainsays is similar and easier to
understand in all kind of levels.
But, however, I also think thatyou exposing yourself to other
people, people that are worth tobe with, because not everybody
has that that you will helpothers to grow in situations
(49:49):
that they wouldn't know.
Nicole Smith (49:50):
No, I agree with that.
I'm more meant for the sake ofcoping with those aspects of
your life.
Sometimes it feels good to feelseen in those things and in a
space that you can go, that youdon't have to necessarily
explain.
The most beautiful thing aboutour story is advocacy.
We do get to advocate just that.
She is alive and breathing andsurmounting all these obstacles
(50:12):
at such a young age.
It's beautiful to go out andshe always has a cheering
section.
It's this little tiny person, alittle tiny yellow walker.
That's just like she's doing it.
People are like just clappedfor her.
It's almost like she bringsthat awareness wherever she goes
.
That's just so sweet to witness.
Daniela SM (50:29):
Yes, I'm mentioning this part for in general, for
everything, I always think, yeah, I want to find my tribe, which
is kind of what you were sayingand that's what is making me
think, well, but I wonder ifthat's wrong, like we actually
need to have both.
Nicole Smith (50:45):
Well, and I agree that it is both.
It's just like the concept ofgrief is really needed to sink
into.
It is necessary, but to live init is wrong.
There's a respite where there'sa healing in grief.
That is necessary, but to livein it means that you're
imprisoned by it.
(51:06):
The same thing, I think, withthe communities we put ourselves
in.
I think we put ourselves toomuch in silos, even like a
typical person.
I think whatever your communityis, like people around you and
you're right, like podcasts.
Really I have a podcast my own.
It's a lot of the same types ofstories that you're just like
this whole other world is openedup before you.
That brings you another levelof sympathy that you can never
(51:29):
accomplish without having knownthat those worlds exist.
But I think there's a balancethat needs to be maintained
there too.
I mean, honestly, the tribeswithin the CP community that
we've gotten into.
It's helped me realize whatquality of life my daughter will
have in the future that I wouldhave never known.
Those communities really haveopened up a lot of those doors
(51:50):
for me in my mindset about thecare of my daughter and what her
life will look like, but Iwould never want to just put her
into a community with onlypeople with cerebral palsy.
It doesn't seem like that wouldbe a healthy space for her.
Daniela SM (52:04):
I see, so you're still working being a mom, a
double mom and a wife.
Nicole Smith (52:08):
Yes, a few months back, late last year, I gained
a caregiver for my daughter.
I can get a little bit morebalance back into my life, so I
was able to start working againand pouring into my non-profits
called Dignity Defense Institutedignitydefenseorg, and we
really are an advocacy nonprofitthat focuses on education on
(52:29):
human value, human dignity andthe different ways in which
cultures can measure worth, andto sort of try to get cultures
to change their mindset aroundhuman value in order to just
make a culture that's more awareof our values just because
we're human, no, and statementson that, or if.
Then I've got the podcast.
It's called Pro Dignity, doDoubt, and we explore a lot of
(52:52):
very similar stories to what youguys have on this podcast,
which is so nice to know thatthere's other just really strong
women out there advocating andgiving voices to others that are
struggling but surmountingobstacles, which is who we are
as humans.
That's what I do in addition tobeing mommy, wife, but those
(53:13):
are always my first priorities,though.
Daniela SM (53:15):
Yes, well, thank you.
I appreciate that you're doinga lot and your expectations are
amazing.
Nicole Smith (53:23):
Well, again, I've had to reduce them in some
places.
Daniela SM (53:26):
Yes, of course we cannot do.
You know, my mother-in-lawalways used to say you can't
have everything.
And I'm like maybe I can haveeverything, but not always at
the same time.
Nicole Smith (53:36):
Yes, or a little bit.
Well, and having a strongpartner is really really
important to that.
I think that's about the reasonwhy really anybody can find
balance is that if you don'thave a spouse that's providing
that cheerleading and assistivemeasure like I do it for his
career, he does it for mine, andit comes in seasons too and
(53:56):
being okay with that.
I think young people need toknow that that it's not always
going to be like full on all thetime.
Sometimes you're going to bethis, sometimes you're going to
be that, sometimes you're goingto be those things and multiple
things and sometimes nothing atall.
That's just life, yeah.
Daniela SM (54:09):
You have to work really hard.
I mean, especially inrelationships.
It's actually the hardest jobthat we have and we don't think
how important it is.
You know, and communication andall the things that you don't
teach you in school that aresuper important.
Nicole Smith (54:23):
They're super, super important.
Daniela SM (54:25):
Yes, so, nicole, thank you so much.
We went over the time becauseit was too interesting that good
talk for hours actually,because I have so many questions
that I could ask you.
You do.
I love your questions, thanks.
I will put all this information, the show notes, for people
also to follow on your podcastPerfect.
And again for sharing and forbeing so kinder and teaching us
(54:48):
all about your world.
Nicole Smith (54:49):
Oh, thank you so much for having me on, I
appreciate it, thanks.
Daniela SM (54:53):
I hope you enjoyed today's episode I am Daniela and
you were listening to, becauseeveryone has a story.
Please take five seconds rightnow and think of somebody in
your life that may enjoy whatyou just heard, or someone that
has a story to be shared orpreserved.
If you think of that person,shoot them a text with the link
of this podcast.
This will allow the ordinarymagic to go further.
(55:17):
Join me next time for anotherstory conversation.
Thank you for listening.
Hasta pronto.
Hi, I'm Daniela.
Welcome to my podcast, becauseeveryone has a story, the place
to give ordinary people, stories, the chance to be shared and
preserved.
Our stories become the languageof connections.
Let's enjoy it, connect andrelate, because everyone has a
story.
Welcome my guest, Nicole Smith.
(00:35):
Nicole is a dedicated advocatefor human dignity.
She has a background in law andpublic policy and a successful
career in communication and,most importantly, she is a wife
and a mom of two beautifuldaughters.
Nicole, in this story, opens upabout the emotional turmoil she
endures as she navigatesthrough her youngest daughter's
(00:58):
diagnosis and the challenges hebrought with it.
She emphasizes the importanceof grieving and managing
expectations, while talkingabout the significance of having
a supportive drive during thehealing process and emotional
exhaustion.
Can you imagine the strengthand resilience it will take to
(01:18):
endure a 29 hour labor with thefirst child and then face the
hardship of trying to conceive asecond child, along with the
even more challenging experienceof raising her second child,
diagnosed with cerebral palsy?
This episode is a testament toa mother's strength, love and
(01:39):
resilience in adversity, and Ilearn a lot thanks to her story.
I am grateful for that.
So let's enjoy Nicole's story.
Welcome, Nicole, to the podcast.
Oh, thank you so much forhaving me on.
Yes, I'm excited that you'rehere.
I really was dying for you tocome to the podcast and then,
when we have an initialconversation, I was fascinated
(01:59):
by all the things that happenedto you, so I am happy that
you're here.
Besides that, I ask you toplease come to the podcast.
Just tell me why do you want toshare a story?
Nicole Smith (02:10):
Well, twofold, I would say one for an empowering
measure for someone else goingthrough a similar circumstance,
and then two, an awareness ofwhat can happen throughout our
story.
That becomes a little bit moreapparent.
But those are really the tworeasons, so that people know
that they're not alone in ourmaternity.
(02:31):
It's very difficult, but whenyou have special needs situation
, that's kind of next level, alife experience.
So an encouragement as well asjust an awareness.
Daniela SM (02:42):
Yes, and I appreciate that because it's
true, people don't talk enoughabout that.
I mean, I do believe thateverybody has their own
experience, so you can hearmillions of advice, but
everybody goes through thedifferent things, but you're
always good to hear others.
Nicole Smith (02:57):
Ours is a unique enough story that there still
are a lot of people out therethat have gone through something
similar just an awareness andempowerment.
Daniela SM (03:05):
Yes, and I know that what you told me before is
quite incredible.
When does the story start?
Nicole Smith (03:11):
Well, I like to start the story entry into my
maternal story.
So I was about almost 30 yearsold when I gave birth to my
first daughter.
I really say I just reallydidn't understand what strength
meant until I gave birth to ahuman person.
It's pretty wild.
I had a 29-hour labor with herand, unmedicated, pushed hard
(03:31):
enough where I burst almostevery blood vessel in my face.
I got up an hour later and I'mwalking around and going, wow,
like this is so powerful.
I know that not everybodychooses that path, but I just
thought, well, if I can do it, Iwill, if not, I won't.
And I couldn't believe I gotthrough this really massive show
(03:53):
of strength.
I kind of say it was likeentering into a world of Oz
where everything was black andwhite before, and then entering
into a world of Technicolor.
I just and I know that soundsexaggerated, but really it was
this idea that how strong that Iwas as a woman, that I could do
this really phenomenal thing,and that really anything else I
(04:14):
did, I could say, if I didn'tsucceed from my perspective of
what success looked like, atleast I had this, I was powerful
and it was very an impactfulstory and moment for my life.
So about a year into my firstdaughter's life, we decided we
wanted another one and wethought, well, this is going to
be just as powerful andwonderful of an experience.
(04:37):
And it turned out to be a muchdifferent experience than the
first.
So I started to experience aphysical ailment that would
allow me to.
Well, I was in immense amountof pain 24 seven for three years
straight.
I was tied to my fertility andthat kind of stuff.
So I wasn't able to conceive achild for a long time.
(05:01):
Once I was starting to findsolutions to it, I then I
started having a lot ofmiscarriages.
It took me about three years toconceive my second daughter and
that was also very impactful.
We were very grateful, veryscared, like pregnancy wasn't
all that complicated, I wasn'tconsidered high risk.
This was coming into COVID.
That world made things a lotmore complicated than it ever
(05:24):
should have been At that time.
If anybody is really aware of,in the medical realm, what it
meant to be pregnant during thattime was, you know, telehealth
visits, parking garage examswhich I just felt so bad for the
nurses and the doctors at thistime, you know, not able to work
in a clean and properenvironment, everything was just
(05:45):
such a weird, weird time.
Daniela SM (05:47):
But I mean you said you feel bad for the doctors
and nurses.
What about you?
I mean I don't think that oneexpects to be checked from that.
You know private areas in theparking lot.
Nicole Smith (05:58):
Yes, yeah, well, yeah to to like go in behind
these little screens, and thatwas part of our story too.
I actually didn't have all ofmy tests and stuff done in time
for me to go into labor, so a 27hour labor.
I was touched very few timesbecause they didn't want to
introduce an infection into oursystem that would affect me or
(06:19):
the baby.
I would be checked at around 27hours when they were starting
to realize that my daughter wasin distress.
The nurse had been coming inand out every once in a while
telling me like hey, roll overon your side, okay, fine, I'm
like, okay, just labor and along.
Finally she comes back in theroom with a physician and the
doctor says you know, look, Iknow we haven't checked you, but
(06:42):
I feel like it's reallyimportant that we check you now.
I was like, okay, she reachesher hand up in there and I don't
have an epidural understand.
So what occurs in the next,like 10, 15 minutes was all I
feel, everything.
She goes yep, oh, my gosh, you,we have a prolapse cord.
All these alarms start goingoff.
20, 30 medical professionalsrushed into the room.
(07:03):
I have no idea what a prolapsecord is, I just know clearly
this is bad.
So the doctor jumps on thegurney with me, the nurse jumps
on the gurney with me.
I'm looking around, an absoluteterror, what's happening?
My husband's like okay, justlike two seconds ago we were
quiet and now everybody'srushing to the room.
They're screaming to cover meup because I clearly very
(07:25):
exposed and we're about to gointo public areas.
When you're in labor, you knowyou're like modesty goes out the
window.
But I was kept thinking of that.
Poor dad in the lobby was justtrying to get a cup of ice for
his wife.
That's the woman being used asa human ventriloquist puppet
because her arm was still upinside me, trying to keep the
(07:47):
baby off of the cord.
So a prolapse cord, just forreference, is when the cord
comes out and advances the babyand it gets pinched off, so the
oxygen flow is cut off.
Essentially it meant that mydaughter was suffocating to
death.
You know, has her hand up there, keeping the baby as much off
the cord as she possibly can.
They run me into the OR asquickly as possible.
(08:10):
They put the mask on me and I'mbreathing, but at this point,
like everybody's, like pullingmy limbs every which way they're
shoving catheters in me.
Remember I can feel every inchof everything that's happening
to me.
I remember just like startingto ask everyone what their name
and their job was, because Ineeded something to ground
myself.
Like what is happening, gettingall these names, and one
(08:32):
anesthesiologist sort of takespity on me.
She sees this single littletear run down my face, like what
is going on.
She goes you know I can tellyou're really overwhelmed.
You know we do this every day,honey, like you're going to be
okay.
And I was like but I don't havean epidural.
What are you going to do?
Are you going to rip her out ofme?
She said no, dear, you're goingto be put under general.
(08:54):
So, which means you get knockedout.
Within like 10 seconds afterthat sentence I was out like
light and when I woke up, I wokeup in recovery.
The issue with having noepidural and going into general
means that you come outimmediately feeling everything.
So you feel that you've beencut open.
(09:14):
There's nothing to like stemthe tide of the pain.
They started putting me onnarcotic pump immediately, but
it's kind of like you're chasingthe pain and you never quite
meet up with it.
So I don't deal the well onnarcotic at all.
So I was loopy, I was cryingand begging my husband to tell
(09:36):
me where the baby was and whathappened, just totally out of my
mind, had no clue what wasgoing on.
I guess we were there for aboutthree hours and they never
brought the baby back.
We kept waiting and of coursemy husband has more solid
grounding and time than I did atthat time because I'm just out
of my mind.
Finally, after about three,three and a half hours, they
(09:59):
bring her back to me and theyacted like everything was
totally normal.
They bring us into laborrecovery Almost immediately.
We started noticing somethingvery wrong, but it would take
them four days to take itseriously.
Daniela SM (10:15):
With my daughter.
Nicole Smith (10:17):
With me.
Obviously I was in an immenseamount of pain.
I felt everything.
The pain medication never quitecaught up to it.
Every time I moved it was likebeing torn in half.
It was excruciating.
Remember, I gave birth to yourchild before 29 hour of labor.
I felt really intense painbefore, but this was like next
(10:37):
level I've never really quiteexperienced.
The first few days we started tonotice things like her eyes
used to roll back full whites inthe back of her head and she
used to oscillate like she washaving these massive seizures.
That's when she was awake, butshe was rarely awake.
She was often really asleep andnewborn sleep a lot but her.
It was kind of almost likeimpossible to wake her up.
(10:58):
Then she couldn't actuallylatch when I was trying to nurse
her or suck, swallow none of it.
She didn't eat for quite a fewdays.
The response to the emergencywas great, but the doctors
afterwards it was incrediblyfrustrating experience.
Our nurse kept going.
Well, she has to drink X amountof milk at a time.
They weren't giving me anyresources, that were just
(11:21):
desperate to try to get her toeat.
The doctor would say we couldgo home and then they said that
we had to stay and then we couldgo, and then they say that we
had to stay.
It was just these crazy backand forth every half day.
When they finally made thedecision that something really
was wrong, they weren't aware ofwhat it was, or at least they
wouldn't tell me what it was.
(11:41):
I remember very distinctly thisis COVID time, so there's like
coffee is very hard to come bybreakfast sandwich.
That's not like hospital.
My poor sweet husband was likeI'm going to find you like a
solid cup of coffee At this time.
They had taken my daughter awayto do some testing, so I was
(12:02):
totally unaware it was happening.
I was just scared.
So he left.
And then, sure enough, likethis massive team of doctors
came in and it was like theprimary physician that we had
been working with, severalneurologists and this other lady
that had been standing in theback of the room for a long time
.
They never told me who she was.
So they kept going throughthese lines questioning, and I'm
(12:22):
like my husband's not here, I'mkind of freaking out.
And finally they point out thelady and she kind of comes
forward and gingerly tells usthat we're not going home, that
we're going to go into intensiveNICU for extensive testing to
find out what happened.
My husband comes back in theroom coffee's in hand, like what
is happening?
(12:43):
I'm like I don't know.
We're not going to be able togo home.
Also, nicu meant that myhusband wasn't allowed to stay
with us.
He was allowed to walk us toour room, but then he had to
leave the hospital promptly.
One very important detail atthis time in our journey was
that I stopped taking allmedication whatsoever because I
(13:03):
was afraid of giving any type ofnarcotic or any strong
medication in my breast milk toher.
To make the hyperlithargy worse, I was at this point just cold
turkey.
The reality of high intensiveNICU is that you don't have a
bed to lay down in.
What you do is this tiny, veryfull room of all the medical
equipment you could possiblyimagine and a tiny little seat
(13:25):
in the corner.
That is where you stay.
Then at night, around sixo'clock, your name has been put
into a raffle.
This raffle is you're drawn tosee if you're allowed to get a
hotel room.
I say that very, very loosely.
It's just a room with amattress on top of a box I'm
(13:45):
literally meaning a box with oneblanket on it.
You get to stay there until thenext morning around eight
o'clock You're told to removeyour things and then you have to
go back to that tiny littleseat in the corner.
Daniela SM (13:59):
It's not a hotel room, it's just a room.
Nicole Smith (14:01):
Yeah, they call it like a hotel.
It's supposed to be set up likeone.
It's not.
Having not been on painmedication, it was very
difficult to sit in that cornerall day and not really have much
relief.
Of course you're just terrifiedof what's happened to your
child.
They're not really telling youvery much.
They have this long list ofthings they're testing for.
(14:24):
I asked one very nice NICUnurse please write down all the
tests you're doing and for whatpurpose you're doing them.
She did.
She took the time, wrote outevery test and for what purpose
it was.
I was able to check it off.
My routine was I stayed in theroom until about 10, 11 o'clock
at night with her.
I'd take a break around eightto go shower and then come back.
(14:46):
There was always a neurologistthat would do his rounds around
that time.
Then I'd wake up and I would doit again.
I get there around 6.37 becausethere's another neurologist
that did pre-rounds and I had mylittle system.
I could just guide the process.
Then, after about a week wewere transferred to long-term
care, which then you're allowedto have a little bed in the
(15:08):
corner like a seat roll out seat.
We were there for about a month.
They never, like I said.
They didn't tell me until I waseavesdropped on a nurse
transition.
They'll do patient debrief,like their medical history.
Holding my hands next to thedoor, pretending to do something
productive, I'm listening tothe nurses say that she had been
(15:29):
resuscitated at birth.
I had no clue.
My husband hadn't been there soobviously he didn't know.
I wasn't awake for it so Ididn't know.
I guess she had totally stoppedbreathing.
What confirmed that she hadactually been resuscitated at
birth was an insurance bill, ahospital bill that said $746 for
(15:52):
resuscitation and newborninfant.
Daniela SM (15:54):
Then you have to pay or I had to pay that.
Nicole Smith (15:57):
Oh yes, some of it had been come off from
insurance, but that was a lineitem in the billing system.
That that's how I found out shehad been resuscitated at birth.
Daniela SM (16:10):
When you were sitting in the room and you go
by lottery if you were going togo to sleep or not.
So if you didn't get to thatroom, where did you go?
Nicole Smith (16:17):
You're home, a hotel next door if you don't
live close by, or you can sit inthe chair if you'd like.
Daniela SM (16:25):
Oh, so you get to go home.
Nicole Smith (16:26):
Yes, you could go home.
Yeah, honestly, it was actuallyreally sad, especially in
intensive NICU.
These children that have beenthere for a really long time and
their parents live in otherstates and have other children
and jobs they have to maintain.
A lot of the kiddos are alone.
Sometimes it's neglect to.
Unfortunately, these kids don'talways get the care they need
(16:48):
from their support systems.
You could tell the familiesthat were really a lot like us.
Eventually I was able to startchanging out with my husband.
We had COVID rules.
You had to be there for Xamount of days and then you
could switch out with someoneelse so I could go home and
actually sleep in a bed.
After a few weeks I started tonotice certain families did the
(17:09):
same thing, like the husbandwould come and tend and then
switch every few days with themom.
There was a couple moms like methat were pumping and sending
their milk in to make sure thatthey were supplied.
But I had one of these cleaningladies.
Just sweet, sweet lady told mehow grateful she was to us for
always making sure our daughterhad someone to love her and take
(17:30):
care of her, because too oftenshe goes into rooms and these
children have no one to holdthem or to love on them.
Daniela SM (17:37):
Wow, that's so sad.
Nicole Smith (17:39):
Yeah, I had to routinely walk around NICU both
my husband and I when any day wewere there and look in the
rooms and just pray over eachchild for their health and their
well-being in there, because weknew actually a couple of our
friends prior to the situationhad lost their babies.
We knew what a blessing it wasthat we were here and I know it
(18:01):
was hard to see that as ablessing in the moment, but it
was so easy that she could havedied the day she was born and we
know what it had felt like towalk through those moments with
our friends having to bury theirbabies, that it was something
that we should be grateful for,to pray that blessing over
(18:21):
others in the same situation.
Daniela SM (18:23):
But that's beautiful, because you were
focusing on the positive ratherthan the negative.
Nicole Smith (18:28):
Yeah, which, like I said, not easy.
There was a lot of moments ofbitterness.
That's totally normal Part ofher cares and I'll bring back to
that.
That journey of bitterness andwhat I call opportunities for
grief are really, reallyimportant.
So she was there for a month.
She was never able to self feedso we had to get a gastric tube
(18:50):
inserted, which is theypuncture a wound through their
abdomen, attach their stomach tothe abdomen wall and put a
little tube in through theirstomach wall.
So it totally bypassed heresophagus because milk was just
going straight into her lungs.
Pneumonia, death that'sbasically the alternative.
Once we finally got thatinserted, we were cleared to
(19:11):
leave.
All the medical stuff became mystuff.
It's in a nurse doing it, itwas me doing it and I don't have
a medical background.
I struggled with it a lot.
She had to be fed by a pump 24,seven, basically, like at night
she would be hooked up to amilk pump and it would pump into
her system and we had to get upevery so hours to refill those
(19:32):
things.
She had to be monitored to makesure she was continuing to
breathe and not aspirating andthose kinds of things.
She stopped breathing a lot.
That was a very normal dailyoccurrence where she would just
stop breathing, turn purple blueand then I'd have to shake the
life back into her, basicallyover and over and over again.
It's very common where peopleare like my kid choked on a
(19:54):
piece of chicken that one time.
That it's scary, scary, butthat was literally my everyday.
A lot of that bitterness cameup because there's just so much
fear and uncertainty that gotthrough this really hard thing.
You're thinking you're on theother side of it and every day
just brought another level oftrauma, day after day after day.
It was hard to handle and again, I don't have a medical
(20:17):
background but, as I am tounderstand, even if you are a
doctor or nurse, if this happensto your kid, it's still
difficult.
It's hard to handle that as areality.
Of course, yeah, there's oftenthis thing that is spoken over
parents in a similar situationIn mine, my daughter was 100%
normal until we had an accident.
(20:39):
It's more seen like an accidentin that which she is 100% not
normal anymore.
So her diagnosis is calledcerebral palsy, which is
essentially ischemic braindamage that comes from a lack of
oxygen that affects musclecontrol, and muscle control can
be anything every muscle on thebody, including the esophagus,
your ability to swallow, yourability to talk, your ability to
(21:01):
walk, your ability to anything,because we actually have
muscles that do a lot ofdifferent functions that we just
don't really think about.
There's a lot of question markswith cerebral palsy.
Every person that has thistotally difference.
I remember getting this poemspoken over us a lot.
I guess it's very common forfamilies that have children with
disabilities and it's this ideathat you planned a trip to
(21:21):
France and you ended up landingin Denmark.
So you have the expectations ofFrance the sights, the sounds,
the food, that experience iswhat you have your expectations
on.
But when you land in Denmark,it's still beautiful, it still
has wonderful food and wonderful.
It's just slower and it's justa different world, different
(21:42):
experience that should be seenas beautiful, just as beautiful
and in a lot of ways that's verytrue.
I don't think that I appreciatedthat poem being spoken over me
as much as they were.
People were just kind of likeyou should be grateful, be
grateful, your baby is alive,your baby is breathing, and I
was just like I am grateful.
(22:04):
I'm so grateful, but I'm sobitter because I have to be
grateful because there's breathin her lungs when it's so easily
not in her lungs, because thatwas my daily reality.
It was just hard to tell people.
I don't think you understandwhat we're going through.
I know what your intentions are, good and pure, and you want to
encourage me because our lifeis beautiful, but it's really
(22:27):
hard.
It is, like I said, going backto encouragement to families
going through this, I wouldreally encourage you to take
those moments in which you feeloverwhelmed and you want to cry,
to cry, to sink into thosemoments that make you feel
overwhelmed, because those areopportunities to grieve, because
(22:48):
you need to grieve that you didend up in Denmark instead of
France.
It's okay that yourexpectations weren't met and
really what we're grieving isunmet expectations.
That's really what it is.
Daniela SM (23:02):
I feel like when people tell you you should be
grateful, it's more sympathythan empathy, because they are
telling you there that youshould be grateful for what you
have.
Yes, okay, but why can't I nothave more?
Why can't I not expect more?
Why can't I not feel better?
Nicole Smith (23:16):
You'd want that, but it can't be something that
keeps you in that cycle of griefLike grief is very important
and it's something that's ahealing mechanism that you're
supposed to sink into and tobring you relief and growth out
of that To not let people tellyou what your journey is
supposed to look like, becauseit is a journey.
(23:36):
I have other friends withchildren with cerebral palsy and
one of my really close friends.
Their birth story is verysimilar.
Hers was tied to a medicalevent in the womb and so hers is
a much more severe version ofour daughter's cerebral palsy.
She's 16, so my daughter'sthree Definitely different parts
of the journey because they'vehad many more years to get used
(23:59):
to, to heal, to adapt, to seethis new reality that they're in
as something that's deeplybeautiful and purposeful and
impactful.
But the mom she says she getsso upset about people posting
pictures of their vacationsbecause their daughter's in a
wheelchair and she can't go tothe beach and she can't do
certain things.
And it just reminded me howmuch this is a journey and
(24:22):
there's certain things that justlike sort of hit your heart in
weird ways.
It just depends on the personyou know.
Like we were saying, it's veryunique experience.
I remember when we were in NICUthe nurses do this wonderful,
very sweet thing where they makethese beautiful signs with your
daughter or son's name and theydecorate the doors of your the
(24:43):
NICU room.
And I was so mad about it notat them, but I was very upset
because it meant that she wasgoing to be there for a long
time.
When they moved her to adifferent crib, from her
original crib to a differentcrib, I got very upset with that
too, because it meant she wasgoing to be there for a long
time.
That now that bed was needingto be used for a child that was
(25:06):
newer, my husband kept going.
You know, nick, like this is agood thing.
You know you should see this.
I'm like I just can't see itlike that.
I just didn't want to see itlike that.
And again it's.
You have to grieve throughthose moments and sink into
those feelings, you know,recognize the source of that
discomfort and then do somethingwith it, don't just sit in it
(25:27):
forever.
But yeah, it was just funny, myhusband, he had different
things that will sort of triggerthose hard moments for him.
You know he's like I don't evenget why that's upsetting to you
.
I'm like it just is to me.
For one reason or another.
It's been an interestingjourney.
Daniela SM (25:41):
But it's interesting that you talk about
grieving, because you know wealways talk about grieving when
somebody dies, there is, likeyou said, when you don't have
your expectations.
Grieving is a word that you canuse.
You know in more regular raceshow to deal with that, because
you do have those feelings, asyou have some feelings that
upset you, what your husbanddidn't have, other ones and we
(26:04):
all different things, differentthings affect us, right, and
it's important that we kind ofacknowledge and respect it and
honor it and then, of course,get the proper tools to move
away from that, because youdon't want to be in a negative
spot, absolutely yeah, butthat's the difficult, that's the
work, yeah, yeah.
Nicole Smith (26:24):
I mean, this has been my life saying for really
ever expectations of the deathof joy.
You know, interpersonalrelationships often become
tumultuous when someone doesn'tmeet our expectations, and so
realigning our expectations towhat that person is able to
accomplish makes things muchable to accomplish joy in those
(26:45):
relationships.
I've just noticed thatthroughout my life, like with
our children too, you know, ifthey're health journey, she
didn't meet our expectations.
We thought that life would go adifferent way and our
expectations weren't met.
Something else came out of thatthat was not easy to find joy
in.
But when we realign ourexpectations to what our
(27:06):
children are capable ofproducing for us, like our
daughter, we fully expected tonever eat on our own or ever
speak or to ever walk, to stopcomparing her to another child
that can speak and eat and walk,because she will never meet our
expectations if we keepcomparing them to other
desirable outcomes.
(27:26):
And that way you can celebratethe things that are about her.
And I do that with my otherdaughter too.
You know I tried very hard tolook at her because she's her
own sassy little self to go.
Sometimes it's my expectationthat I'm placing on her that
she's not acting within theproper order of what I believe
is right.
Sometimes she's just her, andso just trying to keep that and
(27:50):
infiltrate all parts of my life,that reality that sometimes my
life's expectations won't be met, but it still doesn't mean that
it won't be joyful, it won't bepurposeful and it won't be
loving.
My life with my girls, my lifewith my youngest daughter,
absolutely is.
It's transcendent joy.
I'll say it that way.
(28:10):
I, going back to my friend thathas a child that's similar to
mine, he said you know, we haveour lows are really low, but our
highs are really high.
And I think it's true.
It's like they don't have tomeet our expectations, they can
just be the fact that they liveand our breathing is just a
beautiful, wonderful thing andwe get to celebrate that and I
(28:31):
get to advocate for her and findjoy and pursuit of making her
life the best life she possiblycan have.
It's been a hard journey butit's been a beautiful one that I
would like to encourage otherpeople in and also to again
going back to awareness.
Awareness this things canhappen Awareness of families
going through something similarand maybe to choose different
(28:54):
words when they're encouragingthose families no, you can't
speak in empathy, but somethingthat, in sympathy, is to just do
life with them.
Don't try to fill it with words.
Maybe just ask them what theyneed.
Like us, going through this andCOVID meant that nobody could
bring us food, nobody couldclean our house, nobody could do
really much of anything for ourfamily.
(29:16):
As time passes, people forgetthat you're still going through
a really hard time.
So maybe a friend is two, three, four, five, 10, 20 years into
it.
Remember they're still goingdown that path.
They're still on a journey.
Bring them a meal or offer totake their other kids to the
park for a while, or see peoplein their journey and try your
(29:38):
best to empathize and be presentwith them.
Daniela SM (29:41):
Yes, this is something that we are not told
right, I will feel awkward, Idon't know what to say.
I will feel awkward to tell youanything about my kids because
it could be all happy.
And then I don't want you makeyou feel bad and I guess you
also walk away from your regularfriends because they really
don't understand, or you don'twant them to feel comfortable,
(30:04):
or they don't want to feeluncomfortable.
So how was that journey too?
Nicole Smith (30:09):
Yeah, actually that's a wonderful question.
So I did have a season that Ikept trying to pursue.
People try to plan things andbecause I felt so alone Again,
probably COVID made it worsePeople just kept not showing up,
and not showing up, and notshowing up.
It was hard to continue to berejected, felt rejected every
(30:30):
time that they had somethingelse that was scheduled conflict
, and I know they probablydidn't mean anything by it.
But I finally got to the pointwhere I just had to cut off
energy output for those things.
That couldn't be a two-waystreet.
My hope was, too, was to buildenough stronger relationships
around individuals that could bea part of our journey, so I
didn't have to always explainwhat was happening.
(30:52):
Sometimes that's hard becausewe go out in public and my
daughter is nonverbal and shewalks in a walker.
People are constantly askingwhat's wrong with her.
Nothing's wrong with her, likeshe's just her, and sometimes
I'm okay with those questions.
Sometimes I'm just tired ofanswering those questions.
I was trying to build a tribethat I didn't have to explain it
(31:14):
anymore.
We could show up, our kidswould play together the way they
could.
I didn't have to explainanything anymore and in some
ways I did build thoserelationships.
Their kids are typical kids andwe can show up and we can play
and they celebrate her victoriesand they pray over her
challenges and those have beengreat.
And then I just sort of cut offall of the other ones.
(31:36):
That was just too hard to getthem to understand where we were
and then to treat the questionsthat people had outwardly as
opportunities to educate.
And it's mostly kids.
They're like hey, mom, why shegot wheels?
Or confusion over why shedoesn't verbally respond.
But she does ASL, american SignLanguage that she understands
(31:58):
what you're saying.
So speak to her just likenormal.
I might translate for you.
But to speak like she's anormal person because she
totally understands what you'resaying, don't expect her to
answer normally.
You know those sorts of things.
It's been interesting tonavigate those pathways.
Daniela SM (32:13):
I mean, I don't think I will have asked the
question because I think it'simpolite.
You telling the story, you aremaking people aware of something
that they don't know.
Right, yeah, they see somebodyelse or they see her.
They know what the story is.
The question is more what'syour story rather than what's
wrong with you.
Nicole Smith (32:30):
Yeah, what's wrong with that kid?
It's kind of fun to make peoplerealize to sign language is not
just for someone who is deaf orhard of hearing.
That's been one of the biggesteducation points we've had,
because the assumption is thereare nonverbal people that you
use sign language as theirprimary mode of communication
(32:52):
and you know she's a stronglittle girl.
It doesn't make sense why shewould have to be supported in
the way she is.
But she has a balanced disorderso she stands independently.
She just flops right over.
Daniela SM (33:05):
She's three and she's great at sign language
already.
Yeah, that's pretty good, she'samazing.
Nicole Smith (33:09):
Actually it's very common, like with her age,
to do what they call augmentedcommunication.
It's like a little iPad orpictures that they can point to
you to tell what they need.
Well, I started doing signlanguage with her really really
young, because I realized hercomprehension was really really
high.
She understood what was goingon.
Cognitive capability she wasalways like a year ahead of as
(33:32):
she tested.
She was always like a yearahead of her age.
So, around one year old, shescreamed all the time because
she was frustrated, because shewanted to tell you what she
wanted, but she wasn't able totell you what she wanted.
Everybody does like a little bitof sign language with their
kids before they can speak and Iwas like, okay, well, why don't
I just learn it and we'll justlearn it together?
(33:54):
And so now she can form smallsentences like a three year old
would.
It's helped a lot.
She still screams a lot ascompared to another child.
It's easier to go like make aloud noise to get my attention
and then to look at me, that forme to look at her so she can
tell me what she wants.
We don't have to yell.
I always say we use our handwords.
(34:15):
You know no yelling, don't yellat me.
Daniela SM (34:18):
But she can hear.
Okay, so she knows that she'sscreaming.
Yeah, oh, she does.
Nicole Smith (34:23):
Well and that's the weird thing is too, we'll be
in public and I verballytranslate whatever I'm signing
in my in words, because mostlyit's an encouragement for one to
teach her, but also toencourage her to use her words,
because somebody else isspeaking to her that way,
because she can hear.
So people are kind of like theywatch us for a while and then
(34:44):
they ask can she hear?
I'm like yes, you're just fine,it's just she.
Her muscle control in her mouthmakes it.
Where she can't actually formwords in order to speak, her
vocal cords work just fine.
It's the muscles that controlthem that are the problem.
Daniela SM (35:00):
So yeah, well, I mean, she's three and that's
difficult times anyway, so itwould take some time.
Can we go back to theexpectations point?
I seem, from your backgroundand your job, what you used to
do on a note, you still do it.
You probably have always haveexpectations for yourself.
(35:20):
How do you learn to perhapslower them?
Or which sounds negativealready?
So how do you better work,direct them, change them, modify
them?
Nicole Smith (35:31):
I love that question Like that's one of the
best ones.
I think a lot of times too inthis process it's so much
centric towards your child andmeeting their needs that
sometimes you forget you're partof this process too is giving
myself more grace.
I still do that work.
I'm still do human rights work.
I've learned to try to build alife in which I can create
(35:54):
almost like silos a bit, so thatI can step to the side and be
something fully, so that I don'tget too much cross
contamination.
I get overwhelmed and then Istart losing all ability to
organize anything and I willfail understanding that
something will fall through thecracks.
Like the other day Iaccidentally my daughter turned
(36:17):
eight my oldest and I got theparty time wrong.
I put it down for one and itwas 11.
And so 45 minutes into theparty I get a call from the
company like where are you?
And I was like okay, everybodyrun, run.
You know, like simple thingslike that, like and I cried.
And I cried and cried because Ifelt like I wasn't being a good
(36:37):
enough mom to my oldest,because everything goes into my
youngest and this one thing Iwas supposed to get right so
that she felt special andimportant.
Thankfully, all the moms were sosweet, you know.
They ran, we had the party andthen we went back to our house
and ate pizza.
It was fine, but I rememberhaving that like sitting in that
moment going reduceexpectations for perfection for
(36:58):
myself.
I will fail.
I will do something to not meetmy family's expectations,
because I'm a person and I'mhuman and I'm my worst critic
when it comes to that.
I'm never supposed to letanything drop and for as many
places I have spinning, it'sokay that some will drop and
some will break.
I can pick myself back up andit'll be okay, you know.
Daniela SM (37:23):
And we build these expectations because we can do
it.
We have done it, we can do more, so we added it is interesting
what you said, and it's alsointeresting what you said about
your daughter and feelingfrustrated.
It happens Somebody else istaking more time of you than the
other and you want to be fair,and fairness I guess it's not
the word anymore, it's moreequity.
You know you take the time thatyou need for everyone instead
(37:44):
of equality.
Nicole Smith (37:45):
I've noticed a challenge.
My oldest daughter has alwayshad very defined views around
what she believes how the worldshould work.
Because there's a five year gapin them a lot of the times it's
hard for her to comprehend that.
We did a lot of these samethings with her early on.
She's old enough now that she'slike hey, you know, you're like
spending a lot of time with herand I go well, I take about 30%
(38:11):
, let's.
It's like a normal baby.
It's a lot of work just to doyoung children.
Of course.
She just doesn't recognize itbecause she doesn't remember
that we did all those thingswith her too.
So she always says, well, younever, and you never do this
with us.
And I was like, look, and itwas kind of like training her in
in expectations as well.
So you're placing a lot ofexpectations on mommy and daddy
(38:32):
and the season that we're goingto fail to meet them,
unfortunately and it's it's notintentional, it's just that a
lot of this time is taken up bythe medical needs.
I want you to express thoseexpectations and let's talk
through them so that we don'tcontinue to have bad feelings
around us not meeting them.
Daniela SM (38:52):
Oh, that's a beautiful conversation.
Nicole Smith (38:54):
Oh man, it's, and it's been, it's been a thing.
Part of my daughter's conditionis that she wakes up a lot
throughout the night, so Ihaven't slept in like forever.
You know shorter fuses withthat, so just verbalizing like
look, mommy hasn't slept in likelike years.
Some days are worse than others.
I'm trying to walk her through,aligning expectations and
(39:17):
giving grace to, because she sheneeds to learn that as well.
Earlier on the better, I think.
Daniela SM (39:23):
Yes, yeah, that's true.
I have a story from somebodywho also he works on managing
expectations and he works reallyhard on that.
He written a book and alsowriting a course.
Nicole Smith (39:34):
Yeah, yeah yeah, well, and to express meeting
those expectations isn't atransference of love.
My oldest has a hard timerecognizing an equity in love
Like that.
Like there's only, like a likephysical space in your heart
that is dedicated to each hersmust be so much bigger because
she's getting so much more ofyour time.
(39:55):
No, like, that's not how thatgoes.
You know it's.
You know, of course, you knowshe's younger, so there's more
time anyway.
But yeah, we love you equally.
It's just you have differentneeds that need to be met and
just trying to be purposeful atthe time that we do give her to
make sure that she does knowlike, hey, you know we're boring
into you specifically and yourneeds and that kind of stuff,
and we know over time it won'tbe as bad.
It's just she has a lot ofextra needs, are youngest right
(40:19):
now.
That will get through and inthe grand scheme of their life
won't be such an intense amountof time spent where it's just
like my oldest is forgotten.
But yeah, it's, it's hard.
Daniela SM (40:30):
She will know that you have done the best you could
.
Yeah, yeah, you work on humanrights and here we are, you
advocating for your daughter.
It feels like you are having adouble purpose with your
profession now.
Nicole Smith (40:42):
Yeah, I say that my mission was given flesh and
blood when she was born.
I grew up in a home that wasvery service centric, so when I
grew up I ended up on thecommunication side of global
human rights.
I helped a lot of people inother countries that I never got
to hug or touch or tell themthat they were important and
(41:04):
loved and special enough forpeople to show up and serve them
because they were importantjust because they were human.
You know no conditions right?
There's a struggle in thatbecause I don't get to
physically tell them thosethings where when my daughter
was born, I felt that physicalconnection obviously, where I
got to tell her those things Ididn't get to tell that child
bride in Uganda or that sexslave in Afghanistan that I was
(41:26):
advocating for it's.
It's been wonderful to seethose things come full circle
and it's become just a moreenriching journey, even in the
professional side.
Daniela SM (41:35):
Yes, she's three.
But apart from that, when shegrows older, would you have more
time to sleep?
Will you have more time foryourself Things?
Nicole Smith (41:44):
change a little bit, I think.
So, yeah, it will.
So the thing with her and again, cp is so different.
If you get early intervention,things can really improve pretty
rapidly.
If, depending on the person,right, you know early on we
thought you know she'll never doout any of these things.
We have really pushed very hardfor that early intervention.
When the neuroplasticity isreally high, when the brain can
(42:06):
adapt.
It's looking like my daughterwill walk.
It will look like she will talk.
She will get through thesethings.
It's just a matter of when.
It could be 10 years from now,I don't know.
It could be 20 years from now,I don't know.
Or it could be five, I don'tknow.
So you just have to take onestep at a time and realize that
work on the front end willincrease quality of life for her
(42:28):
in the long run.
If we try to push it back anddo it older, your
neuroplasticity goes down as youget older, like your brain has
a harder time to adapt.
Really where we're at, we'rejust like we're trying to find
those pathways.
Like you will walk, you willtalk.
We will just pour into you asmuch as we can and the hope we
can all sleep one day.
Daniela SM (42:50):
And Nicole, what about the relationship between
you and your husband?
Nicole Smith (42:54):
It was a struggle .
I'll be very honest.
My husband, he went through areally hard time about a year
ago.
We're just really kind ofdigging into his mental health,
his physical health, all of thatsort of stuff, to try to come
out on the other side and Iwould say it was really bad for
a good year in there.
(43:15):
But now we're coming on theother side of it.
I think the divorce rate forfamilies like in our situation
is ridiculously high and it'smostly men that will initiate
the divorce in the instance ofinfant trauma.
Oh really, yeah, I mean, whenyou go through this it's really
hard and in general like myhusband not really including his
(43:36):
own trauma from when he was achild just in general it's
really stressful.
The relationships tend to breakdown because there's just a
breakdown in communication overjust everybody being in such a
bad space.
I mean, I remember having quitea few arguments about just
silly things where he would saythings like I thought you were
(43:56):
past this, like it was somethingthat I was struggling with,
with the reality of what we'rein.
How are you past it?
Of course you're not past it.
He's just trying to emotionallyput it under the rug, right?
So being very purposeful withcoming to the forefront with how
you're your feelings aboutstuff, and it was important we
(44:18):
got stronger in our relationship.
Daniela SM (44:19):
I feel like oh, and what about shame?
I mean, I'm sure that he'sthere.
Nicole Smith (44:24):
Yeah, that actually was a big part of our
early journey because there wasa lot of what-ifs like what if
we had done something different?
The birth process it's sodifferent, depending on every
single birth, but so manyvariables were so different than
my first one because of thefact that it was COVID and
nothing was normal.
But I had a deep amount ofshame concerning some of the
(44:46):
choices during that birthingprocess, like I should have
known.
Of course I wouldn't know, butmaybe I should have taken some
advice differently or I shouldhave.
Really, there's any momentslike these.
There's always something thatyou could have done different,
and so it took me a while tojust come to terms with.
Things were just going to turnout the way that they were.
(45:08):
I'm just going to have to beokay with that.
I can't be angry at thesituation anymore and I can't be
angry at myself anymore for howthings turned out, because it's
hard to watch your childstruggle from something that
could have been different,prevented.
But I'm not a physician.
I wouldn't have known.
Daniela SM (45:24):
And your family, your relatives, your mother,
your father.
How did they handle it?
Nicole Smith (45:29):
I always find it so interesting.
The way people respond totrauma is so unique.
My mother for a year wouldn'thardly touch my daughter because
she was afraid of hurting her.
It's hard to feed a child witha gastric tube.
It's just, it's very unnerving.
You're hooking up to a pumpthat might get clogged and where
we started feeding withsyringes and she stopped
(45:52):
breathing all the time, likewhen she was really young.
She just stopped breathingevery few minutes, like it was
really frequent.
Her response was just to nottouch her at all.
So one day I think she was likea year, year and a half was
like mom, your granddaughterneeds to be fed.
If you don't feed her, she willnot be fed.
And so she was like you'reawful, nicole.
(46:15):
I was like, look, if I go intothe hospital or my husband goes,
like somebody has to be abackstop here, you know, and you
guys live the closest you'regoing to have to get over it.
And my dad was very similar,like he used to be a paramedic
and he still wouldn't touch her.
He was just so afraid ofhurting her.
Yeah, oh, wow.
And my dad's response wasdenial for a while.
It's just an over exaggeratedresponse to nothing.
(46:40):
He's like he wanted it to be,that my mother-in-law just never
slept.
She was just terrified all thetime that she was going to die.
My father-in-law was like she'sgoing to be perfect and fine
and like he just had hispredictions.
Yeah, and it's just likeinteresting to like watch
people's response to what Icalled the hurt baby, and
(47:00):
everybody came to a rescue insome way that they felt like
they could.
You know sister in laws,brother in laws, aunts, uncles.
You know their own response,the way they knew.
I found it to be a sweetprocess to watch, you know,
sometimes frustrating, but whenI looked at it like, this is how
they're processing whathappened, coming to terms with
it, and I felt it as more of abeautiful thing than it was like
(47:25):
with my mom, where I'd getreally frustrated.
Like mom, you got to get overit.
Like I had to.
People say like trauma and badthings happen to people that are
strong enough to take care ofit.
I don't think that's true atall.
I think that you respond to itand you can either run towards
it or run away from it.
Running towards it, it means alot of hardships and a lot of
ways, but, man, you get so muchstronger.
(47:47):
It's like I would never changeit for the world, like if it
meant that she was dead.
If I could get the otheralternative in that situation, I
would take this any day of theweek.
She's alive, she is her bestself.
Would I wish this on her if Icould avoid it altogether?
No one, every parent, wouldever wish this on their child.
Of course not.
But if I had to choose betweentwo scenarios of it happening
(48:10):
dead or alive I choose alive andI choose fighting for and I
become stronger and moreresilient and more grateful and
more just, better.
I feel like my heart is morefull because of it.
Daniela SM (48:26):
And you're tired, more tired.
Nicole Smith (48:28):
Oh, so much more tired and I'd encourage people
to get that tribe thatunderstands.
I kind of go back to thatfriend that has a daughter
that's older.
It was so nice for him tounderstand that when you show up
to something, you're alreadyexhausted, he gets it.
It's like that tribe thatunderstands that you don't have
(48:49):
to explain what's happened, allthe things that are invisible to
everyone else.
They get to just see this righthere.
She's smiling, she seems happyand well adjusted, but there's a
lot of stuff behind the scenesthat doesn't get to be seen
Sometimes.
I'm grateful for that, becausewe don't always want to show our
(49:10):
grittier side.
Other times I wish people could, because they could understand
a little bit more what goes intomaking the person that's
standing in front of them.
There's so many things that arehidden.
Daniela SM (49:23):
And you know, I understand what you said about
staying with a tribe, because Ithink, in a way, we always want
to be with people that our brainsays is similar and easier to
understand in all kind of levels.
But, however, I also think thatyou exposing yourself to other
people, people that are worth tobe with, because not everybody
has that that you will helpothers to grow in situations
(49:49):
that they wouldn't know.
Nicole Smith (49:50):
No, I agree with that.
I'm more meant for the sake ofcoping with those aspects of
your life.
Sometimes it feels good to feelseen in those things and in a
space that you can go, that youdon't have to necessarily
explain.
The most beautiful thing aboutour story is advocacy.
We do get to advocate just that.
She is alive and breathing andsurmounting all these obstacles
(50:12):
at such a young age.
It's beautiful to go out andshe always has a cheering
section.
It's this little tiny person, alittle tiny yellow walker.
That's just like she's doing it.
People are like just clappedfor her.
It's almost like she bringsthat awareness wherever she goes
.
That's just so sweet to witness.
Daniela SM (50:29):
Yes, I'm mentioning this part for in general, for
everything, I always think, yeah, I want to find my tribe, which
is kind of what you were sayingand that's what is making me
think, well, but I wonder ifthat's wrong, like we actually
need to have both.
Nicole Smith (50:45):
Well, and I agree that it is both.
It's just like the concept ofgrief is really needed to sink
into.
It is necessary, but to live init is wrong.
There's a respite where there'sa healing in grief.
That is necessary, but to livein it means that you're
imprisoned by it.
(51:06):
The same thing, I think, withthe communities we put ourselves
in.
I think we put ourselves toomuch in silos, even like a
typical person.
I think whatever your communityis, like people around you and
you're right, like podcasts.
Really I have a podcast my own.
It's a lot of the same types ofstories that you're just like
this whole other world is openedup before you.
That brings you another levelof sympathy that you can never
(51:29):
accomplish without having knownthat those worlds exist.
But I think there's a balancethat needs to be maintained
there too.
I mean, honestly, the tribeswithin the CP community that
we've gotten into.
It's helped me realize whatquality of life my daughter will
have in the future that I wouldhave never known.
Those communities really haveopened up a lot of those doors
(51:50):
for me in my mindset about thecare of my daughter and what her
life will look like, but Iwould never want to just put her
into a community with onlypeople with cerebral palsy.
It doesn't seem like that wouldbe a healthy space for her.
Daniela SM (52:04):
I see, so you're still working being a mom, a
double mom and a wife.
Nicole Smith (52:08):
Yes, a few months back, late last year, I gained
a caregiver for my daughter.
I can get a little bit morebalance back into my life, so I
was able to start working againand pouring into my non-profits
called Dignity Defense Institutedignitydefenseorg, and we
really are an advocacy nonprofitthat focuses on education on
(52:29):
human value, human dignity andthe different ways in which
cultures can measure worth, andto sort of try to get cultures
to change their mindset aroundhuman value in order to just
make a culture that's more awareof our values just because
we're human, no, and statementson that, or if.
Then I've got the podcast.
It's called Pro Dignity, doDoubt, and we explore a lot of
(52:52):
very similar stories to what youguys have on this podcast,
which is so nice to know thatthere's other just really strong
women out there advocating andgiving voices to others that are
struggling but surmountingobstacles, which is who we are
as humans.
That's what I do in addition tobeing mommy, wife, but those
(53:13):
are always my first priorities,though.
Daniela SM (53:15):
Yes, well, thank you.
I appreciate that you're doinga lot and your expectations are
amazing.
Nicole Smith (53:23):
Well, again, I've had to reduce them in some
places.
Daniela SM (53:26):
Yes, of course we cannot do.
You know, my mother-in-lawalways used to say you can't
have everything.
And I'm like maybe I can haveeverything, but not always at
the same time.
Nicole Smith (53:36):
Yes, or a little bit.
Well, and having a strongpartner is really really
important to that.
I think that's about the reasonwhy really anybody can find
balance is that if you don'thave a spouse that's providing
that cheerleading and assistivemeasure like I do it for his
career, he does it for mine, andit comes in seasons too and
(53:56):
being okay with that.
I think young people need toknow that that it's not always
going to be like full on all thetime.
Sometimes you're going to bethis, sometimes you're going to
be that, sometimes you're goingto be those things and multiple
things and sometimes nothing atall.
That's just life, yeah.
Daniela SM (54:09):
You have to work really hard.
I mean, especially inrelationships.
It's actually the hardest jobthat we have and we don't think
how important it is.
You know, and communication andall the things that you don't
teach you in school that aresuper important.
Nicole Smith (54:23):
They're super, super important.
Daniela SM (54:25):
Yes, so, nicole, thank you so much.
We went over the time becauseit was too interesting that good
talk for hours actually,because I have so many questions
that I could ask you.
You do.
I love your questions, thanks.
I will put all this information, the show notes, for people
also to follow on your podcastPerfect.
And again for sharing and forbeing so kinder and teaching us
(54:48):
all about your world.
Nicole Smith (54:49):
Oh, thank you so much for having me on, I
appreciate it, thanks.
Daniela SM (54:53):
I hope you enjoyed today's episode I am Daniela and
you were listening to, becauseeveryone has a story.
Please take five seconds rightnow and think of somebody in
your life that may enjoy whatyou just heard, or someone that
has a story to be shared orpreserved.
If you think of that person,shoot them a text with the link
of this podcast.
This will allow the ordinarymagic to go further.
(55:17):
Join me next time for anotherstory conversation.
Thank you for listening.
Hasta pronto.
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