When Adversity Becomes Advocacy: How a Mother's Challenge Revealed Her Greatest Mission

And that is what brings Nicole here today.

You're about to give the story of a mother, an advocate, a woman, who is just here to share what she's learned along the way.

Giving a voice to the voice of the friend, welcome to episode 262.

What's up, my friend, and welcome to Grit Grace Burr.

I haven't 20 years ago, I awoke from a life-saving searcher only to find that I was left.

Instead of today, I've learned a lot about life, a lot about living, and a lot about myself.

If you're on this podcast, I want to share this inside of you.

Still trying to understand why.

We're still left searching for that next right path, okay?

Well consider this to be your step by step.

You're going through life, you're doing all the things, and you at the end of the day, you can't help but wonder, what was that all about?

You're not feeling fulfilled, you certainly don't feel like you're making a difference in the world, and you kinda wonder, what does it all even matter?

Well, friend, if that's you, well then to be honest, you should change that.

You should start living a life of fulfillment.

A life that brings you joy.

And I believe it all starts by getting clear on your why.

Your purpose.

And that is where I want to help you.

Text the word discover the 5-5-4-4-4.

Again, text the word discover to 5-5-4-4-4.

And I'm gonna get you information into how I can help you to discover your purpose and ultimately create the life that you were meant to have.

SPEAKER_01: Motherhood, it was always part of the plan, but I wouldn't say that I was just this really intense desire for a maternal drive was just there.

You know, it it was, but it wasn't.

And so when it finally kind of hit my heart, it was like with anybody that decides to have children, it becomes a very deep-seated desire, like right then.

So we had my first daughter, and it was a really powerful story.

I always kind of say I was in a world of black and white and transported into a world of technicolor.

And I know that seems kind of dramatic, but it really was.

It was I decided to try to have my birthing process be natural.

I went 29 hours unmedicated, pushed for 15 minutes, broke almost every blood vessel in my face to give birth to this child.

And I was upstanding within an hour of giving birth.

And it was just this really powerful experience that I was like, man, women are amazing.

I mean, I knew we were amazing, but then when you go through that, you're like, man, we're amazing.

My I called it the birth eye.

My husband was on it for months.

He would just stop every once in a while, like, you did that.

I'm like, I know I did that.

If I didn't do anything else in my life, I succeeded.

I I grew a person, I gave birth to that person, I sustained that person's life with my body.

It was just quite a transformative experience for me to become a mother.

SPEAKER_00: So Yeah, that is, I mean, that's absolutely incredible.

And I love this just to even hear you tell the story of just your voice just lighting up with excitement and enthusiasm.

Yeah.

So did you end up having more children or just one?

SPEAKER_01: Yes.

So about a year into my eldest daughter's life, we decided we wanted another one.

And it had taken us a while to get pregnant with my oldest, but uh we didn't really, we'd planned, you know, we're like, okay, now we're gonna go into this next season, it's gonna be great, we're gonna have another child, hopefully within nine months of deciding, right?

So it did not turn out that way.

We ended up on a path that was much, much different.

So essentially, pretty much the moment I decided that I was going to try for the next kid, I ended up sustaining basically a female infection that would put me in mind-bending pain 24-7 for three years straight.

And in my pursuit of solutions, I went through every medical avenue you could possibly conceive because pain is what I call as a great motivator.

You know, when you're in pain, you're gonna really strive in many different ways to make that pain go away.

But one of the unfortunate ramifications for this as well was that I experienced a season of secondary infertility.

And that's when you have already have a child and you can't have another one, and that's actually accounts for about 25% of infertility is actually multiple children, which is I didn't know about that until I experienced myself.

Well, throughout this journey, I was finding solutions around three years in, but the unfortunate part was that in pursuit of those solutions, I kind of was transported into a new season of miscarriages.

So pretty much every month I was, or every few months, I was losing a child.

And that was next level.

I I didn't think it could get worse from what the season prior to that, but it definitely did.

And so there was just a deep, deep struggle in my life, physically, emotionally, spiritually, that I just wasn't seeing the end of.

But again, pain being a great motivator, I continued to trudge on towards finding the ultimate solution to the problem I was experiencing.

And I did.

Four years in, I ended a little over.

I ended up conceiving my second daughter.

And in true Cosette, her name is Cosette, Cosette's Forum.

She's incredibly resilient.

She stayed for the long haul all the way to 37 weeks.

And I ended up going into labor at the height of COVID, and I mean April 3rd, 2020.

So this brought a whole new level of complication that really the world had not anticipated, but least of all us.

So for those of you who do not know, during that time, they restricted how you did prenatal care.

So if they thought you were a low risk, all your stuff was done telehealth.

And a lot of your testing, all of your testing were done in parking garages.

So of all of the medical or really any services that you can receive in life, I think gynecological exams are really not a curb-sized service type thing.

unknown: No.

SPEAKER_01: You know, don't just like pull up and like, okay, we'll just like hook these stirrups right up to the like a window tray at like a drive-thru or something.

I don't know.

Anyway, it was just a wild time.

So I ended up not receiving my 36-week testing because of these restrictions, which is a test they kind of check for potential infections, that kind of stuff.

So when I go into labor, I am in labor for 27 and a half hours.

They touch me very few times because they're afraid of introducing an infection.

And this is problematic for many, many reasons, but mostly because she ended up having what they call a prolapse cord.

A prolapse cord is when the umbilical cord comes out in advance of the baby.

And as anybody knows, the umbilical cord is how the child receives oxygen.

So this basically cut off oxygen flow to my daughter.

So, like I said, 27 hours in, the nurse comes in, tells me to roll over my slide.

I roll over my side, and she's like, okay, everything's fine.

She leaves, and this time she comes back with a doctor, and the doctor says, Hey, you know, I know we haven't touched you, but I think it's wise that we touch, you know, check you.

Okay.

So she uh checks me, sticks her hand up there.

Sure enough, finds out there's a prolapse cord.

She screams out, prolapse cord, there's 20 medical professionals in the room.

The nurse jumps on the gurney with me, the doctor jumps on the gurney with me to keep her hand up to press the child off of the umbilical cord so she doesn't suffocate to death.

I'm wheeled to the OR, everybody's buzzing around.

I feel everything, I have no epidural, they're putting catheters in me.

They're, you know, I feel I'm just bowing in pain.

I'm starting to cry.

I don't understand what's happening.

And one of the anesthesiologists takes mercy on me and explains, you know, hey, this is overwhelming to you, but we do this every day, you're gonna be okay.

I said, you know, that's that's fine, I understand, but are you just gonna rip her out of me because I've been awake for about 10 minutes now, breathing into this thing is are you just gonna tear her out of me?

And she said, No, you're you're gonna go under.

And so within moments after that, I pass out.

And I wake up in the recovery room, my precious husband by my side, I'm sobbing out of my mind, I'm confused, I'm disoriented, I don't have a child, and nobody's telling us anything.

So I'm in this state of delirium for about three, four hours, and they finally bring my daughter to me.

They don't tell me anything has gone wrong.

I am just again, like, so you have to understand when you come out of a surgery of this type without an epidural, you feel everything.

And I mean everything that just happened to you.

So they're trying to desperately pump narcotics into me to catch up with the pain, but it doesn't work.

So I'm in pain, out of my mind.

I'm also stoned out of my mind, and not in the happy way.

So it's like it's just uh the worst of all worlds at this point.

So we're kind of in this situation for about four days in which nobody's really telling us what's happened, but we're starting to know something's are wrong.

So she's not able to latch, she's not able to suck or swallow anything.

Her eyes are rolling in the back of her head, she looks like she's having these massive seizures.

She's hardly able to actually wake up, really.

And when she is, she's displaying these really odd behaviors.

And so, you know, every day it's like you can go home, you have to stay, you have to you can go home, you have to stay, that kind of thing.

So on the fourth day, they finally send in a team of doctors to inform me that we're not going home, that we're gonna be extended in our stay into high-level NICU for extensive testing to find out what's going on.

Well, what they hadn't told me and never actually formally told me is that she was resuscitated at birth.

I actually found out during a shift change three weeks into NICU from the nurses kind of do like a medical health recap.

And they, in this recap, I overhear them saying that she was resuscitated.

A few days later, I had it confirmed with insurance that there was a line item for$746 for resuscitation of newborn infant.

And for all the testing that they got done, because that's what they do.

If if a newborn is in medical distress, they literally don't consult insurance, they just do everything, like a whole gauntlet, spinal taps, EEGs, you know, everything you can imagine.

And they never thought to tell me that she was resuscitated.

She was born not breathing.

So about a month in, they just basically tell me and NICU that in order for her to go home, she has to be able to self-feed.

But that's not looking very good.

So let's go ahead and get a gastric tube inserted, which is a tube that goes in through the abdominal into the stomach.

They pin the stomach and the abdominal cavity together, puncture a hole, and that's how she's going to receive her food.

With that comes a lot of other types of monitoring and medical interventions that I would be very quickly force educated on.

I'm not, I don't have a medical background, clearly, you know, while in public policy does not involve any of that, but it definitely does not involve any of that with concern to your own child.

So I cannot describe in full detail the level of challenge that period was.

Because in addition to her not being able to eat, she had this nasty habit of stopping breathing a lot.

I can't count how many times my child has stopped breathing in her now four years of life.

Very early on, it was very, very frequently, and they weren't as severe.

It was more like she couldn't catch her breath, you know.

You get when you've run too fast, and you're like, she would do that a lot.

But as she kind of got a little bit older, it became more severe.

I would turn around to the get something out of the refrigerator, and I'd turn back around to a completely purple child, in which I'd have to repeatedly, time after time, every single day, bring the breath back into her lungs.

And again, just medical intervention in general, if you have a medical background, that's one thing, but you're just so overwhelmed.

This is your kid, and you're trying to, okay, what's happened?

You know, what are the symptoms?

What are how are how are we going to tackle this massive thing that the learning curve is very, very steep?

So, in addition to the normal requirements for a newborn and an infant, you're piled on top of this a mystery to what's going on and what the solution is.

And six months into this journey, she would be given the formal diagnosis of cerebral pousy.

And for those of that don't know what that is, it's a muscular disorder that's tied to that brain damage.

And I have always marveled at CP.

The more I've gotten to know it, is every person with CP has a very unique experience.

No one case is alike.

And in the case of my daughter, she is exactly who she is.

And she has fought tooth and nail every day to surmount those hurdles, proving the resilience of the human spirit is just near limitless.

And she is a deep inspiration.

She really is.

She's an amazing person.

SPEAKER_00: Wow, wow, wow.

So much.

My goodness.

That whole experience.

I mean, I just have to say how traumatic the whole thing was.

I mean, we we all heard the stories of people in the hospital during that time and in just the horror stories of them being alone.

And uh, and so I mean, I just have to acknowledge that for one.

And then two, the thoughts of what you and your husband were going through in after the fact of not knowing what was going on, that had to be just horrible.

SPEAKER_01: Yeah.

So to the first point, I was like most everyone else, you know, we understood the gravity of COVID, but until you're walking that out personally in the hospital experience, it's it's very surreal.

I think that's the best way of putting it.

And all the parents in there were just deeply struggling.

Actually, they had a policy at the time that they would allow one parent in, but not the other one.

So when we were transferred to NICU, they allowed my husband graciously to see where we're gonna stay, but he was just removed from the situation.

He had had to go.

And, you know, couldn't even go out to eat together, couldn't see each other or interact, you know.

He we couldn't be a family together as we walked this new journey.

There was one family in Nikki, I remember the mother was paraplegic, actually quadriplegic.

So they hadn't allowed her to have her husband come with her.

So they're they were actually a parent group, like a couple, were allowed to be present for their child.

And I remember hearing that all the other parents were throwing a fit about this, because if you were gonna let them have an exception, you should let that be the same for us.

And I understood the heart of why they felt so strongly about this.

Of course, this mother was a very unique case, but we just didn't want to do it alone.

It was just really hard.

These parents were grabbing on to any straw they could to get the support they needed because being a NICU is hard enough, but to have to do it totally alone is next level.

And as for the second point of the emotion, yeah, it's challenging to come to terms with the reality you're kind of thrown into, right?

And that's every struggle that you have in life.

I know you walk that through yourself in your own journey with your own condition and that kind of stuff.

But yeah, I I just remember trying to deny it.

My husband kept going, you know, this is our new normal.

I'm like, no, no, no.

I wanted to stay in NICU as long as I could because I felt like if I went home, I was bringing home a new reality that I wasn't able to accept.

And he was like, could not handle being in the hospital anymore.

He he had to go home.

And I, so I had to make the decision what was best for my family holistically.

My husband, my oldest daughter, and my oldest daughter was really struggling with it in a big way, too.

Because remember, she was just a concept with a dedicated bedroom, is what we called her.

After she was born, she wasn't able to meet her.

She could only see her through FaceTime.

And she's five, she doesn't, four or five years old, she doesn't understand, she hasn't a clue.

SPEAKER_00: Yeah.

SPEAKER_01: You know, so it was a journey.

So I don't know if you've heard this poem before, but there's this poem that a lot of families with children with disabilities often hear, I guess, is when you give birth to a child with disabilities, it's like planning a trip to to Paris, to to France, and arriving in Denmark.

The sights and sounds are in Denmark are totally different to that of France.

They're still beautiful, they might be quieter and more I have you heard this before, Kevin?

SPEAKER_00: I have not.

No.

I've never heard this.

SPEAKER_01: Yes.

So this is this is one that's like a staple.

I mean, I can't tell you how many I heard this from therapists and doctors and friends.

And if I heard it again, I was gonna scream.

Tell tell me that again.

Because I'm like, look, you don't get it.

You don't understand.

Because what you're telling me is I have to be grateful for where I'm at.

And you're right.

You're right.

But that that is a journey to that place of gratitude because what's happening is that you have to mourn your dead expectations.

So I have the saying in life, expectations are the death of joy.

And it's very reasonable to have an expectation that says I have, if I have one child, I can have another.

It's very reasonable to say that if I am pregnant, that I give birth to a child that meets all of my expectations.

But the thing is, is that I didn't give birth to a child that met my expectations.

She didn't meet my expectations.

Nothing about that situation could ever meet my expectations.

But it takes time to grieve those expectations that could not be met.

And I had to grieve that I didn't show up in France.

I had to come to terms with the beauty of where I was in Denmark.

And that takes time.

It cannot be foisted upon you, it cannot be encouraged upon you.

You have to wake up every day and I would say take the opportunities for grief.

When you cried, you had to cry.

You had to sit and sink into it.

Why?

Why does this hurt?

And examine it, turn it around in your hands, hold it up in front of the light, and look at it in seriousness.

Why do I feel this way?

Because there's a reason why you're feeling that, and it's completely valid.

Because I went through a time where I was so deeply bitter by the fact that I had to be grateful that she had breath in her lungs.

I take it for granted every day that I can inhale, exhale, and continue to function as normal.

But I had a lot of friends prior to even giving birth to Cosette that had been force educated on.

The devastation that is a dead child.

It is unthinkable the tragedy that is that you have to bury your baby.

And I can't, I had to look at that, going, I have to feel gratitude for that.

Because yes, she struggles to have breath in her lungs, but darn it, she does.

Like I need to see, it's even if it's hard, I have to look at it and I have to see with through the lens of gratitude that every day I get to get up and I get to hold her in my arms.

I get to walk a path with her that is so unique.

Even from remember, I had a comparative analysis.

I could compare what the journey was with my oldest.

I knew what it was supposed to be like.

And in some ways that made it harder.

But in some ways it made it better too.

That I could say, okay, this is her.

She's unique.

She's walking her own journey.

She's may not be able to eat normally, but she's able to eat.

She's thriving in her own way.

You know, it's like to take hold of the little things that were normally just taken for granted.

SPEAKER_00: Yeah, of course.

I mean, first and foremost, again, I just look at you in admiration.

And and I listen to you and the just the the words that you just spoke and the emotion of it all.

I just want to say though, like applause to you though that you kept going.

That you've made it through this, and that you can speak about this situation so relatable to all of us.

You know, as you mentioned, you know, I've had my own thing, and and when I went blind, you know, I I can remember the the quote unquote professionals you know telling my parents, you know, that you know, Kevin, you know, needs to to you know accept this and move on.

You know, he he should be, you know, accepting it by now.

And and when you talk about that, I I I couldn't help but think about it in that situation.

And where, you know, the fact of the matter is true is what you said is, and I love I love that that poem that you talked about.

I'm gonna have to look that one up.

Yeah.

Um, about about landing in Denmark.

And the fact of the matter is, is that it takes time for you to recognize the beauty.

SPEAKER_01: Yeah.

SPEAKER_00: You know?

SPEAKER_01: And to be patient in that.

Don't like shove the poor person.

It's like, do it quicker, heal quicker.

And you're like, you know.

I I had a friend actually, uh, I met her at her son's funeral.

He was diagnosed with a terminal illness at 20 weeks of gestation.

And sure enough, he was born and he passed away within a day or two of birth.

And we met at her funeral.

I served at her funeral and we became friends through that situation.

And uh, she actually recounts that that, you know, especially if you're task-oriented, if I do XYZ, I check the box, I did it.

Like I should be through this.

And she, it took her so long to realize that she is no longer the person she was before that moment.

She will never be able to go back and to come to terms with the fact that this was to be a journey that she cannot control.

Like some aspects you can, you know, you can take the opportunities for grief because those are opportunities that allow you to continue down that journey towards recognizing the beauty with where you are.

But that people try, you know, like this medical professionals that are trying to shove you down that path quicker doesn't work like that, you know?

SPEAKER_00: So yeah.

Wow, wow, wow.

Well, something else I wanted to ask you is I had read, I think I maybe read it on your website or or I'm not sure where I saw it at, but something said that when your daughter was born, that kind of you were given a new mission or a new mission in your life was born.

SPEAKER_01: Yeah.

So one of the really interesting things about my career path, and I get this asked a lot, and how you deal with so many sad realities that are around the world.

And the truth was is that the hardest part about it was that the child bride in Uganda, I can advocate for her freedom, but I can never wrap my arms around that little girl and tell her how important and precious she is, to do life with her as she walks her own path.

But when I gave birth to my daughter, it was like my mission was given flesh and bone, somebody that I could hold and walk through physically.

And it just gave a whole new level of reality to the work I'd already done.

And also my connection to it.

So one of the big things about the work I do now, I actually run a nonprofit called Dignity Defense Institute.

And one of the core missions, obviously, is to recognize the dignity of all those.

Because if we don't recognize the dignity of every member of the human family, it's really hard to justify trying to serve or help anybody in their time of need, right?

But my experience as a mother in this scenario was you give birth to this child, you're go through NICU, you're basically tossed out of NICU and into a world you have no clue, you have no direction, you're just desperate, right?

And so her, her, my experience with her gave me a newfound understanding of what it is to struggle through this moment totally alone.

That moment in between the event that occurred that changed your life, and then basically death, because you're on this journey until you're on the other side of in into eternity, right?

So what can my organization do to facilitate, help ease that burden?

Because our current system, because I remember I've worked with a lot of nonprofits, our current system requires that essentially the person that is hurting actively seek up help on their own accord.

So you're mom like me and you have no clue which way is up, and you just have to go to Google and start Googling, because the reality is the nonprofits are spending so much of the resources to do their mission well.

They don't know how to find the people they're serve.

You have to come to find them.

And you don't know which one's the right one for you in this point of your journey.

There's all the stuff, right?

So Cosette really inspired this aspect of my mission, which is to form bridges, digital bridges.

So we know everything about the purchasing journey of an individual that wants a pair of shoes.

Like they know the type of shoe they want, they know which point in the journey they are to purchasing it, that can directly lead you to the place that can give you that product and help you process it, right?

That payment and get you the thing you desire.

Why are we not doing that for the nonprofit world?

And so my background in the digital human rights worlds, I've utilized it in a way that can make those relationships for those that are hurting to the nonprofit that can serve them be more seamless.

And when you're online and you get a piece of our content that it can be directly connect you with the organization that can help serve you.

SPEAKER_00: Wow.

That is such an amazing, amazing concept and idea.

That is awesome.

Wow, wow, wow.

SPEAKER_01: So Cosette was the inspiration to that.

SPEAKER_00: So yeah, no, I absolutely love it.

Now, there's another, I don't know if if you call it an organization or what it is, but something and I and I want to ask you to explain more of it, but it's about how Cosette learned to sign.

SPEAKER_01: Oh, yeah.

Yes.

SPEAKER_00: Talk to me about that because I am really excited to hear more about this.

SPEAKER_01: Yeah.

So one of the, like I said, every person with CPA, their journey is totally different, right?

So Cosette is will celebrate her fourth birthday in the next couple months.

She is free of her G tube, though.

That was a blessing.

She still has oral motor dysfunction in some ways, but she's able to finally eat, which has been a really just amazing watching her.

She still cannot walk, crawls everywhere, but we do have a walker that she can walk.

But one of the other things is that the brain doesn't send the proper singles to also her mouth.

So obviously she couldn't chew, but she also can't speak as a result of it.

So she is very, very smart though.

Like cognitively, she's actually advanced for her age.

And so very early on, we could tell she was very, very frustrated about not being able to communicate her wants and desires as most toddlers do.

Like, I want this, I want that, you know.

So we started off very early on, like realizing we're going to need to learn sign language.

And this little stinker is like adapted so well.

She's in a school that does American Sign Language Inclusion class.

And she is learning to communicate in different ways, and it has opened up a world, a portal into her mind.

Because that's been actually one of the more challenging things being a parent, not knowing your child.

You know, she has wants and desires just like anyone else.

And not being able to know that, I mean, man, that is it's been really, really challenging for her too.

But also, like I said, for me as a parent, I want to know what she did at school.

I want to know who her best friend is.

I want to know what her favorite toy is, or her favorite movie, or her favorite, you know, these are things that are very important for human connection.

And when you cannot communicate, you it's like you're alone in a crowd.

So ASL has opened that portal into her soul that we have so desperately needed.

And I want to make people aware too that actually one of the more challenges, well, not when interesting aspects of her speaking sign language is obviously people think she's deaf.

SPEAKER_00: Yes.

Yes.

SPEAKER_01: She is not deaf.

So when I I sign with her, I I verbalize and I sign at the same time.

The point being is that she can hear you.

But she needs the the visual cue to at three or four years old to talk back to me in sign language, right?

So, and then also we're learning vocabulary by doing it too.

She can hear, okay, this is the word cat, and I'm saying the word cat with my hands too.

So now she knows the word cat with her ears and the word cat with her her hands.

And it has been just kind of an interesting dynamic to in public.

We're like, is she deaf?

No.

She's not.

They're like, because I could tell she could hear you.

And that was really weird.

Why are you why are you speaking?

Because she can't physically make words with her mouth.

So now her voice bot her voice vocal cords work just fine.

That girl can scream.

But yeah, as far as like muscle control to control it to form words, she cannot do.

SPEAKER_00: Yeah.

Oh my goodness.

That is just that is awesome.

I mean, I just have to say that is that is one of the coolest things ever.

And I love it.

SPEAKER_01: Yeah, actually, I'll tell this one story that I I'm so proud of my oldest daughter.

So she's in Scouts, and her third grade teacher has made it so all the kids in their class had to form a nonprofit with a mission, a logo, a name, everything.

A great teacher, by the way.

And my my oldest decided that she was going to come up with an organization called Sign with Love.

And the mission was to educate people on sign language and the reasons why you need it.

And so she went to her scout leader and said, Hey, can I conduct a sign language class to get the sign language badge for all of the girls in my troop?

And there's like 70 girls in the troop.

It's a big troop and varying ages and everything.

And she conducted several classes and she taught them the basics of sign language.

And then also all the notable people in the deaf community, as well as those that use the reasons why you use them.

It's it's like inspired by my sister, Cosette, that is not deaf, but she needs sign language too.

And so it was just so fun to see the girls, their eyes light up and they're signing for hours after you know the class and everything.

It was just so, so sweet.

Wow.

SPEAKER_00: Wow.

Oh my gosh, I love it so much.

That is just absolutely amazing.

Now, I wanted to ask you was what is the relationship like between your two daughters?

SPEAKER_01: Oh my gosh.

That is such a good question because it is mind-blowing.

It is mind-blowing.

I will tell you, one of the biggest blessings with regard to a journey like this is a deeper revelation about the value and purpose of life, right?

So when my my youngest daughter was very young, I kind of went through this process of just, okay, coming to terms with the reality of what her her future holds.

And everybody kind of looked at her like she was disadvantaged because the life she is going to lead is going to be, you know, different, right?

And then they look at my oldest daughter and they look at her as if she's advantaged.

She's the advantaged one.

And the reality is that us as humans, in order for us to progress in life, we need struggle.

Struggle often births the most beautiful purpose.

And Cosette, by the nature of existing, understands has a very intimate relationship with that struggle, but I'd have to sort of force introduce struggle into my oldest daughter's life, where, so she can understand that point of growth that you need as a human.

SPEAKER_00: Yes.

SPEAKER_01: And her relationship, my oldest, her name's Ari.

So Ari's relationship with Cosette has been a point of intimate relationship with empathy that she would have never gotten, right?

With without having a sister that doesn't meet societal standards of what is normal.

Because it is normal.

Can I understand?

That is totally normal, but societal standards are what normal is.

And for the first time the other day, we were actually denied entry to something because of my daughter, a Cosette's disability.

And Ari, my oldest, was just absolutely dumbfounded and enraged at that this would even be a thing to not just her sister, but any person, any person with a disability.

And almost crying out for a whole group of people that she doesn't even know.

Like it's like she knows her sister.

She doesn't know all of them.

And just crying out that everyone see her dignity, everyone see her value, uh, so much so that they would surmount the obstacles to make sure that they felt their dignity.

Like, she's like, My my sister's important.

And so why wouldn't you strive to make it so that she could experience life?

Because one of our biggest missions is that Cosette is not withheld experiences.

And of course, those experiences might look different.

But like we hike, we we my husband carries her on his back.

We go to the beach and she can't like catching crabs at night, right?

So she can't walk and find, you know, but we she'd like to scurry across the sand like a crab.

Like she will have a life that is enriched by experiences that look different.

They look different, but she will have them.

So it's been so wonderful to watch their relationship grow and the the joys that each other bring through what God has uniquely made them each to be.

Yeah, it's such a joy to watch them.

SPEAKER_00: Yeah, that is absolutely beautiful.

And and my goodness, I I listened to you speak about your your daughter Ari, and I think, I think you're you're you're raising a little you.

She sounds like she is gonna be gung-ho just like her mom.

SPEAKER_01: Well, I I hope she sees the value of of service to others, because like I said, it's a really long life, one that's very sad, that's not in service to others around you.

Just you need that purpose in order to really find the light and joy in life, I think.

SPEAKER_00: So yeah, absolutely.

So if you don't already do enough, you also decided to start a podcast at some point in time.

SPEAKER_01: Yeah, so I did.

It's called Pro Dignity, no doubt.

And it is a lot like this one in the sense it likes to tell stories uh about those that have gone through hardships.

And missionally, my organization is very widespread.

We deal with all sorts of topics, disabilities is one, trafficking is one, so and many other ones as well.

So a lot of these stories kind of highlight the reality of people going through these moments of hardship.

And I've just really been touched by the beauty and the resilience of the human spirit, like I said, these people that have gone through hell and back and have strived to make that thing that was intended for evil to be something that is beautiful and good.

And that's what it's about.

SPEAKER_00: So yeah, I love it so much.

Well, listen, I have one last question for you.

Before I ask that, I want to ask you where is the best place for everyone to go to get plugged into the organizations, to your podcasts?

Where can we send them?

SPEAKER_01: Yeah, sure.

So dignitydefense.org is my organization.

You can come and look and see the mission that we have, as well as if you have any needs and any arena that you feel like you're not getting connected in, just pop on over to the contact forum and myself or someone else at our organization will try our best to extend our network and get you the needs, fill the needs that you have in your life.

Also, any place that you hear podcasts, you can find Pro Dignity, no doubt.

And then I'm all over Instagram, Facebook, you know, that kind of jazz.

SPEAKER_00: So yeah, amazing.

Well, I will be sure that all those links are left inside of the episode show notes.

That will be easy for anybody.

Now, last question for you is in case there's a mother, father, who maybe they're back a few years from where you are today.

And maybe they just had a child who to society isn't perfect, who has issues, what would you say to that parent?

SPEAKER_01: Yeah, so it makes me kind of emotional because I I definitely know what it feels like to be in your place.

It's a place that is challenging, but it is the birthplace of joy.

And take the moments that you need to grieve those unmet expectations, but know that you are not alone.

And even though it's challenging to walk through a journey with a child with different needs, know that it is one that is so deeply rewarding.

It is so deeply rewarding on a level that I cannot explain.

As a good friend of mine that has a child with disabilities too, said our lows may be low, but our highs are so much higher.

And though we need to sink into those lows when they happen, just sink into those highs when they happen too.

Celebrate the little in those little moments of accomplishment that we find our greatest mountain that has been conquered.

And like I said before too, if if you need anything, go to dignitydefense.org, do the contact form.

You know, you're not alone.

And and we want to make sure that too, because this is this is a challenge, but it is a joyful one in the end.

SPEAKER_00: Amazing.

Amazing.

Thank you so much for being here today.

Thank you for for just sharing your story, your your daughter's story.

My hope, my prayer is that somebody today has been impacted by what you had to say.

So thank you so much for being here.

SPEAKER_01: Oh, and thank you for having me, Kevin.

This has been such a joy.

SPEAKER_00: Amazing.

Well, thank you.

And for you listening today, my hope is, as always, is that today's episode wasn't just entertaining, but more so impactful.

I think all of us, whether you have a child or not, I think we can all take so many valuable lessons from today's conversation to apply to light and just to make, you know, as always, tomorrow a little bit better than today.

I'll see you today.