Episode 29- The Season of Yes with Chelsie Nichole
Medical mama Chelsie Nichole's life flipped upside down with the diagnosis of her daughter in utero.
She decided to trust in God's plan for her and her family, and is now a patient advocate and speaker across the country, sharing her knowledge and experience in an attempt to get more funding and resources for chronically ill children.
Though Chelsie is not super active on social media, you can Join her Facebook Group: Pfiezer Pfierce to connect with her and learn more about her mission.
Let’s Connect! I share tons of health tips and more behind the scenes on my social accounts.
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I had this moment, I just started like kind of quietly crying and praying and because I just felt like, okay, Lord, obviously I can't do this. So I need you to tell me how I'm going to do this. And I had this almost Mike, and I'm going to start getting emotional. I had this almost like my life flashed before my eyes.
I almost felt like I was, guided through every stage of my life and shown the other side of the tapestry for a moment when all I could see growing up was the messy. I'm being called this. I'm being called that I have these deficits. I have these experiences, but they were all preparing me for exactly this moment.
And I had no idea that this was going to happen. But it always getting me ready for it. This is Two to Nine's podcast. I am your host, Tiffany Wicks, a mom of seven who doesn't subscribe to the idea that you have to choose between your family and a career. I am on a mission to show the stay-at-home mom who has lost herself and childcare in k Helen.
And the overworked corporate holdout who isn't finding joy and purpose in their career that they can work for themselves, making an impact in an income that serves your dream life. After leaving my nursing career to raise our family, I needed more mental stimulation, but didn't want to give up the privilege of raising our legacy.
I've been in network marketing now for five years. I know the strategy and mindset it takes. To be successful and to live a life aligned with your values and your purpose. Join me as I share my business tips, marketing mistakes, attitude shifts, you need to space out some time for you or ditch your nine to five completely and start working for yourself.
You have the power to change your life. Let's get started. This is just the beginning.
Okay. Hey everybody. Welcome back to the podcast today. I have an interview, which is super fun because again, it's in my living room and that's not normal for me. So today we are going to talk to Ms. Chelsea Nicole. Uh, she is a local here in the Fayetteville area and I wanted to have Chelsea on because Her life has taken a lot of twists and turns that were incredibly unexpected, but to say she handles it with grace would probably be an understatement.
And then the new path her life has taken is one that she never ever considered as a remote possibility, but now is embracing it and she's doing it scared. She's doing it unprepared and she's doing it without. Coaching or mentorship. And I think that's incredibly valuable for you to hear. Uh, when a lot of women and mothers are in a season of, I need to make a shift and a change, but I'm too scared to move.
So this is all about movement and feeling the spirit guide you through that. And, uh, stepping into the scared and the unknown less, the, uh, frozen. Sounds which are coming to my mind into the unknown. All right. I will never do that again to you. I promise. All right. So I, again, will not take up a lot of time here talking.
I'm going to introduce Ms. Chelsea and I want her to give you all of the goods. So Chelsea, welcome. Hi, thank you so much. I'm glad to be here today. Well, I'd love to hear what your life was like when you were young, because I mean, everybody knows that. Well, at least I hope you know by now that your foundation of where you were raised, how you were raised, um, all helps to create the mindset that you have moving forward.
Now it can be changed for sure. You can coach yourself out of, you know, a terrible upbringing, but that will set the foundation. Most of the time for a path that that you pursue in your life. So I'd love to know what little Chelsea was like little Chelsea. So it's funny because if we had done this even three months ago, I would have had a completely different perspective of my childhood.
Funny enough, even though I'm quote undiagnosed, I've recently discovered that I have some form variation of ADD, ADHD. And as I'm telling my friends this, they're all like, you know, You didn't know that? Like you didn't know? Really? Oh, okay. We just kind of thought you did. It never came up. So now looking back on my childhood with that perspective, it changes things for me.
Um, I was what my parents would call a difficult child. Um, I was very scattered. I was called disorganized. I was called lots of not so flattering words growing up, and I really did internalize those. So very different for my siblings. Uh, really focused on academics and education because it didn't come easy for me, although I've always been fairly intelligent.
I've always made good grades. I had to really work at it. And I knew off the bat by the age of probably third, fourth grade. that I had to do really well in tests because my homework was not getting turned in. And I couldn't figure out why. Now I understand. But at the time it just felt like all these other kids brought their homework.
And even when I remembered to do, and I couldn't figure out why. And so now looking back, obviously I understand it, but at the time, it really felt like Sitting in a classroom and everyone else has their homework and they're turning it in. And even when I could remember to do it, I still would forget to bring it.
It wouldn't get back in my book bag. I would have this immediate visualization of my homework sitting on my desk or sitting on my bed where I had left it from doing it the night before. And so I just had to automatically factor in 10 percent of my grade was a zero. That was just happening So it really was I just always felt like I was kind of one step behind everyone and I was treated that way also Okay.
So how many siblings did you have? I grew up one of four the second of four second to four Okay, so you had a decent amount of comparison Growing up. Yes. Well, this one's a little bit different. Yes, and that's two little sweetie sandwiched in the middle I was the youngest girl and then my brother came next and he was the oldest boy and we had the most wretched Sibling rivalry of all the siblings together I think between he and I it was just a constant who could do better who could do better because in my house You weren't valued unless you were performing.
That's the house we grew up in. We watched my sister constantly be undervalued or devalued or just not appreciated because she probably has a similar story to mine, similar situation. So we had watched my sister experience this, and I think we were just very careful not to experience the same things that she was.
And to my parents credit, they were very young. My mom had four kids before she was 25 years old. So they were very young and they were learning. They were growing up with us. And so I try to give them a little grace and a little credit for what they were able to accomplish at such a young age. Okay. So that sounds impressively similar to my upbringing.
My mom had three kids by the time she was 19 and there was zero performance by us that would create value in their eyes. We were just simply a burden and we were keeping them from everything that they would have done had they not had kids. So dang young. So at least, I mean, I'm not going to say at least you had a value measure, a barometer, but I mean, that's, that's terrible to put that on a child to say, this is how you earn your value rather than just the innate value of being born to the King of Kings in heaven and being, you know, part of civilization.
Like that's where our value should come from, but that wasn't for you. So what you graduated high school, I'm assuming. Yes, graduated high school. You got great grades. Where did you go from there? So from high school, I had planned on attending Hunter College in New York because they have a wonderful theater program.
I did theater growing up. Um, really enjoyed being on the stage, but only if I couldn't see the audience, only if I was performing as a character. Auditions were awful. I hated people being able to, or being able to see people see me. Really have always struggled with that. Always struggled being public speaking, being in front of people talking about stuff, I feel like I stumble over my words that I can't keep my thoughts in order.
And so just before I was leaving, it was the only college I applied to. I was accepted. I was all ready to go. And my mom's like, you're not going to New York. I think she thought I was joking when I told her like, this is what I want to do. This is where I'm going. And the realization hit her and she's like, absolutely not.
And so there was going to be zero support, which I wouldn't have been able to do on my own. So last minute, I want to say this is like middle of July, the summer after I graduated high school. And I have to rush to apply to colleges in the state of Georgia so that I can get the hope scholarship and the Pell Grant and all of these things that I couldn't utilize outside the state of Georgia ended up getting accepted to Georgia Southern University.
Um, I started as a poly sci major and quickly realized I didn't love it and I loved math and I'd always been really good in math. So I switched my major to mathematics. I got 104 in my college, my freshman college calculus course, and I thought this is what I meant to do. Like this is where I belong. It just, math has always made sense for me.
I tried tutoring and I remember, Sitting there with this kid across from me, same age, or maybe he was a year older, and trying to explain these concepts that for me were just like, they just clicked. And feeling like, I don't know how, like, there's no other way to say this. I don't understand why you can't understand what I'm saying.
Oh yeah, I get that. As a homeschool mom, I'm doing that all the time with very basic stuff. Okay. Not calculus. I will check, I'm almost checked out of Algebra 2 right now. I'm like, Hmm, yeah, we're just going to keep moving forward. Theoretical concepts. I'm like, yeah, I mean like basic stuff. I'm like, how do you not understand this?
Yeah. But Hey, I wanted to ask. So if you're, you were afraid, you mentioned being afraid of people seeing you, were you afraid of the judgment that you thought they might have, like you were creating stories for them? Absolutely. And looking back, you learn how to mask really quickly. Um, when you're a kid and you have differences that are very obvious that other people notice that other people point out to you constantly.
And growing up with so much anxiety all the time of feeling like if people know me, like who I am, they won't like me. I'm not a likable person. I am different and I'm weird and I'm quirky and I'm odd and I hyper fixate on things and I know weird information about random subjects that no one else gives a crap about.
And that was really hard feeling like I had to, I have this person, I was this very gregarious outgoing person, but inside I was, I'm a huge introvert. I really like my alone time. I really like my personal space. I've got some serious auditory processing. Issues going on that I just never realized. And so I was always like at the height of frustration and anxiety.
And so almost any little thing as a child, being unable to properly manage my emotions would set me off. So I was a volatile kid. I was a, uh, yeller kid. I would get in fights at school. I would get in fights on the bus. Um, Usually standing up for and defending other people because I can't stand to watch someone get picked on.
Yep. That was me. I went through five out of school suspensions in my middle school era because I was fighting for other people who, by the way, never asked me to lift a finger on their behalf. In fact, I had a kid with. Um, in my class with cerebral palsy and he had a walker, um, that he used to transport himself through the hallways and he had this little bag that hung over his walker.
Well, the jerk kids in school love to trip this kid. His name was Chris. They would trip him. He would fall. His books would be scattered across the hallway and he's got cerebral palsy. So he has an incredible time just manipulating his limbs to try and stand back up. Like he needs help. But this kid had such a profound level of independence and did not want help from anyone.
So I happened to be going to the bathroom one day, saw this happen. Chris is splayed out in the middle of the hallway. His books are everywhere. And the rage just builds up inside of me and I just go ape shit on these other kids and I'm fighting them. And once they. Run off and go tell on me. I go to help Chris and then he starts fighting me.
And I was like, what the heck, man, I just helped you. And he's like, I don't want your help. I don't want your sympathy. I don't want your pity. Get away from me. I'll do it myself. And I was like, well, okay then. And that was quite the awakening that a lot of times, like my. Help was not help to them. It ended up making them feel worse about their capabilities and inabilities and all their challenges when I thought I was doing a good thing for them.
So I've taken that into my future with knowing, like, You probably ought to ask people, Hey, I would love to help you with this. Would you accept this help? Um, but when it came to a fighting scenario and you're, you know, disconnected, um, 12 year old, it's like, well, we just, we just go for fists. We just throw hands.
And, you know, in my home, there was a lot of hand throwing happening directed at me. So naturally that was my course of action. So tell me, tell me a little bit about yours. So I'm going to flip the script for a second because in all of my healing therapy, everything I've done, and I've heard your story a number of times, and it's shocking to me what similar paths you and I have gone down and come from.
And so do you think that part of the reason that we so vehemently defend other people is because there was no one there to do that for us? When we desperately needed it. And so my gosh, yes. In fact, there's an episode I am going to be recording tonight that goes a lot deeper into trust and where my trust, um, was broken multiple times within my own family.
And I've always said to people that I should have been loved and protected by the two people who were made to love and protect me the most. And I wasn't. So I grew up thinking there is nobody trustworthy. Nobody will protect me. So I've got to have my own back all the time. And then since there are other people that probably don't have a level of protection, like if they are being beaten up or made fun of and they're not speaking up for themselves, that immediately translated into my mind.
You aren't being protected. So I'm going to do that for you because protected people, confident people will generally say, Oh no, you will not talk to me like that. Right. And they'll, they'll draw a line in the sand and they'll stand by it. But if I see things going down and they're just quietly accepting bullying or mistreating, I'm like, Nope, not okay.
And then I stepped in right, wrong or indifferent. That's how it went down for me. But no, I totally agree. Yes. So back to your question, because I was just curious as I've, as I've done my own healing and like therapy journey, trying to figure out that I think is one of the reasons why, or the primary reason why I have become who I am now, because I felt like I didn't stand up for myself and no one else stood up for me, but I could stand up for somebody else.
No, I totally get that. So that probably became a prevalent part of your identity was I am the protector, not the protected. So how did that move through you when you went to Georgia Southern University? Georgia Southern. Yeah. Delightful. Georgia Southern is not a place to go. Maybe now, but in the late nineties, it was not the place to go.
If you were serious about school, it's a party school and it was really hard to stay focused. It was really hard to manage school and work and homework and all of the other socialization, all of the things that I wanted to be part of my experience. So I lasted just over a year. I did a full year and then I did summer school and I started fall semester.
And just. burnt out. I couldn't, I couldn't keep up the nightlife and the daylife all at the same time. My health was deteriorating. Um, I got really into some things that were not healthy for my body. And so left school and came back to Peachtree City, moved back in with my mom and just kind of sat on the couch and worked for a year trying to figure out what I was going to do.
Maybe not a full year. And at one point, and I've unpacked a lot of this with my mom, so I'm not saying anything that she doesn't already know it, that it's going to surprise her. But there was at one point it was almost a year later, so it was like the summertime, maybe June, July ish of 2000 and one. And my mom says she comes to me and she's like, I can't, I can't watch you do this anymore.
I can't. She's like, I don't know what happened at school. I don't know why you left, but I can tell you this right now. I've given you plenty of time to get your stuff together. So you have three choices. By the end of the week, you're back in school full time, you're working full time or you've joined the military.
Pick one or get out of my house. I'm okay. Okay. And I was pretty bitter and angry and frustrated. At this point, I had Again, spent my younger years sort of feeling like I was this rebellious, defiant, uh, not caring, inconsiderate person. And I began acting that out in my early teens and becoming the person who I was told and treated that I was.
And so I had some issues with my mom and we really struggled through my teen years. And so I kind of sat down and whether consciously or unconsciously was like, Hmm, what's going to piss her off the most? the military. So I joined the service in July of 2001. We all know what happened on 9 11. Yes. So just before that happened, uh, I was in the military and I was in basic training when 9 11 happened.
And my mom, of course, immediately was wracked with guilt for pushing me into feeling like she pushed me into it. And so I went from college to my mom's house and then straight into the military. And that was a really eyeopening and wonderful experience for me. It was humbling, It was completely life changing.
I met my husband in the service. We were both in, uh, the language institute together. And so it really did help me learn more about myself. Of course, it also helped me learn how to mask better because you have to. Right, right. No, I, again, same, same, um, except I went in in 2002 and, um, and then, you know, my whole objective was to get out of my hometown.
And again, it was like, when you're 18, you need to be out of this house. And I was like, okay, I thought college money had been saved for me. Just like you had, you know, thoughts about how this was going to go post high school. I did too. And then like, it was laid on me like, Oh no, there's no money for college for you.
And I was like, wait, what you said there was, and they were like, yeah, well we intended to save it, but you know, like a washing machine broke and you know, my mom had a gambling addiction. And so my dad thought he would one up her and then buy a bunch of cars and car parts. The next thing, you know, They are 60, 000 some dollars in consumer debt and borrowing slash never paid back the money I would earn working at a restaurant full time will go into high school full time.
I had to drop all my honors classes because I was no dummy. I was not gifted intellectually, but I worked really hard and I knew if I was ever going to change my life. I had to do something drastically different than what they did. So I had good enough grades to get honors classes. But at the end of high school, when I thought I had money for college, I made it one year or so exactly like you before I was like, I can't do this anymore.
Like they're just simply not enough hours in a day. And there is not enough caffeine to keep me going with trying to study, work full time, pay for my own apartment. So I was like, all right, I got to have something else. And. Enter the United States Air Force. Like that was my something else. So you met your husband there.
I did not meet my husband in the military. However, he is also a military man. So you do four years of service. I did four years. Yeah. Okay. And then what? Um, I got pregnant. and ended up getting out. It was right around the time my enlistment was coming up due anyway, so I just basically opted not to re enlist.
Although when I first joined, my intent was to retire. I really enjoyed the structure. I really enjoyed feeling purposeful and feeling like what I was doing made a difference, feeling like it was just I felt for the first time I had community. I had other people defending me standing up for me. I also have the drill sergeants and the uppers that, you know, sometimes didn't love my personality and the way that I go about things.
Um, I was more of an ask forgiveness type of person. rather than ask for permission. So I would just do things and hope that people didn't find out. And if they did, then it was like, Oh, oops, my bad. I live by life that way. Yeah. All right. So, well, let's see, you're going to have a baby now. Okay. And you're out of the military.
How did that work out for you? Well, I was originally told that I could never have children. So I have a severe case of PCOS, and I was diagnosed when I was 16 years old, um, I had a very late onset cycle, and then I would have maybe three or four periods a year. So they were very few and far between. They were very light.
Um, I didn't really develop well in my teen years. Um, I kind of always had a really boxy figure. So when I found out I was pregnant, it was a huge shock. Did not think that this was even possible. But you have like five kids, four or five kids? Yeah. Okay, go ahead. So joke's on me. Or them, whatever. Um, huge blessing.
I'm glad it happened. It just wasn't part of my life plan. And I feel like my life has sort of been a series of like blindsides. Just the unexpected coming after me. And I fought it for so long. I told you earlier when I first got here that I'm in this season of yes. Because um, I really did just sit down with the Lord earlier this year and say, I don't know what's going on.
Things just felt like they were unraveling. Actually, it was almost about a year ago, December of last year, things felt like they were unraveling and I didn't understand why. And I felt like, you know, we had been so faithful. So why aren't you being faithful back? And I really had this moment where it was like, okay, he is, and I'm not listening.
I'm wanting to do things my way. And it wasn't that I don't trust him. I absolutely do. I trust him to make it work. I just don't trust him to make it work. My way. Oh, for sure. So I really had to sit down and say, okay, I'm clearly not doing. I feel like I'm not doing what I'm supposed to be doing, but I sort of am.
So I'm just going to let you lead me and you're going to bring the opportunities to me that are meant for me. And I'm going to stop being frustrated or sad that I'm not getting the things I want or I'm not getting the opportunities I want. Those opportunities are not meant for me. They're meant for somebody else.
So I'm not going to envy them. I'm not going to be me. Upset, I'm just going to accept what comes to me as mine and what doesn't is not. And things really did change this past year when I started doing that. And even in that, like you said, the discomfort and that I don't feel prepared for this, the stories keep coming up at church of Moses and of, uh, Daniel and people who were called to something, David, that they didn't feel equipped for, we're not, we're never equipped for what we're called for.
We're called because we are the vessel with which he's going to do the work. And so I just have to be open to it and allow that to come through and not work so hard at controlling image and what I say and what I do and how I present myself, which has been 99. 9 percent of my life is really managing the perception of me because that's how I am.
I just learned to be and I don't want to be that anymore. You know, I'm in my forties now. We were there together and I really feel so good about this stage of life where I didn't think I would even just five years ago. So please hear that, that five years is not a whole lot of time, but I can honestly say within five or six years, I have done a ton of personal development.
Um, I posted on my social the other day about why I even got started on my field of personal development, because even as soon as five years ago, and I'm like 34, 35 years old, I was still trying to conform to the expectations and possibly the image of what other people had of me. So that started all the way from, okay, I am a mom, which, by the way, I was never equipped to be a mother.
Um, and I still, even the first time I saw a positive pregnancy test with our oldest son, I heard my dad's voice in the back of my head say, nobody deserves to have you as a mother. And, uh, you know, it's, Ooh, I just got chills all over my body repeating that because it stuck in my head for so long. And I thought this baby does not deserve to have me.
Like I am not equipped for this. I am not going to do this baby any good whatsoever. And I remember telling Adam, I said, Oh my God, my life is over. And he laughed and he said, no, our life is just beginning. And I thought, Okay. Well, I'm going to lean on his level of trust in who I can become, not who I am, but who I can become for this baby and for him.
So who it's heavy, it's heavy when those, those words, you know, that are really meant to just tear you down. I mean, there's no other purpose of having said that other than just, I want to hurt you and then taking those hurts. So even as soon as, you know, 35 years old, I'm looking at my life and I'm like, why do I keep trying to be something for everyone?
Because I'm never going to please everybody. And then that's what started. You know, being told that you were basically worthless as a human, I thought, well, I have to have some sort of worth in this world if I keep having these babies that were intended for me. And I know there are, there are people who was, well, you know, animals can have a thousand children, you know, even crackheads have babies, but it doesn't mean that they were intended for you.
But I personally, I don't believe that that is not my level of belief. Um, so these children were gifted to me because although I saw myself as incapable to have them, there was a far greater plan. And trust in the capability that I had. So I thought, why don't I step into an image that I think my creator is created for me and not a million other opinions about me.
And that's the wonderful thing about children, especially when they're unexpected as almost all of mine were, is that they come to us. At the moment when we need them most, and also in the moment that we are the perfect fit for them. We are exactly what they need. Um, I'll caveat that with saying, when we are living in one with our Heavenly Father.
Oh, right, right. You have to be open to that. For sure. So speaking of, you talked about blindsides in your life and about children and becoming blessings and all that. Well, you've got a child that is an absolute blessing. And I told you before we started recording, like this kiddo is larger than life, but she was kind of a blindside for you, I'm assuming.
Absolutely. I mean, beyond anything we could have ever anticipated. Uh, I was older. I was 36 years old when we got pregnant with her. We had our first, I call it the first batch of kids. So the older three we already had, um, eight years difference between our Rosie, who just turned five and her older brother Wyatt.
Um, and then Adelaide is a year older, and then Joshua is four years older. So we had that little batch of kids first, and then we kind of started over unintentionally, um, getting older. I double ovulated and There's Rosie. So we thought we've got this down. We've got three kids. We've been through this a time or two.
We know what we're doing. We really wanted to have a home birth. We really wanted to do things as naturally as possible. So we got everything planned for it. I was a little more nervous again because I was 36 37. So in that, you know, advanced maternal age category and we knew things like down syndrome was an option.
We knew that there were a lot of things that just come with being an older mother. So we did the genetic testing. I did have a backup OB. We made sure that we were doing things medically safe and also within the the ideal and the value system that we wanted our child to come into the world. And everything was going great.
All the genetic testing came back. Awesome. Everything looked fine. We had a little tiny, I won't even say scare, just a little question at around 36 weeks. She was measuring four weeks behind and that was quite a significant difference. So we went in for an additional like three hour ultrasound where they like checked everything out and the volume of things that were missed.
It's really kind of give me pause with the medical community for them to have done as much extensive looking at her as they did and missed all the things that they did. No way. However, comma, it is wonderful that it was missed because I would not have birthed her at home. And so coming into that experience next was completely necessary for our journey.
We needed to give her, we needed to give birth at home. We just had to. So I'm so glad that happened. Very easy pregnancy, relatively easy labor and delivery, uh, went into labor. I thought I was around like 4 30. I started having contractions and I'm like, this might be it around 8 30. They'd been pretty consistent, but not really getting closer together.
So called the midwife. She's like, yeah, I think I just want to come over and take a look. She got there around 9 30 called all the family midwife's coming. We think it might be the day. My mom got there. My mom's on the phone and she's like, okay, I'm gonna have my glass of wine and I'll be over after Bobby flay.
Oh, my gosh. Okay. Priorities. Exactly. So she gets there around 10 30 11. She walks in. I'm in the tub, but I'm like chatting, having conversation. She's like, what? Why did you call me? Like, you're not having this baby tonight. Look at you. You're totally fine. And I'm like, well, you know, I'm just feeling we'll see, you know, it might, it might not 1130 comes.
And those contractions just came one after another. So 1130 is when I really consider myself having gone into labor. I couldn't talk through them really anymore. Um, woke Josh up from his nap because he worked odd shifts. And so he had gotten back and I wanted him to be fully present with me when I was in full labor.
Got him up and then She was born at 202 in the morning. So it was like a two and a half hour roughly labor and delivery Pushing did not take very long And when she as she was being born, of course, I'm at the non business end So I can't see what's happening, but I just keep saying oh my god, this child's huge.
Oh my god, this child's huge And they kept saying no, she's not big. She's not big or it's not big because we didn't know it was a she was a girl yet and And then my midwife got really quiet. And so, unbeknownst to me, as Rosie's crowning, this little bubble started forming on her head. And so, Rosie was born with a condition called craniosynostosis, which is where the skull bones fuse in utero.
So her skull bones couldn't overlap, which is why she felt like such a big baby to me, even though she was very tiny. And through one of those bony defects, her brain sack had herniated through it. So she had this little bubble of brain we thought possibly matter, but brain fluid and brain sack that was sticking outside of her skull, like right there at the crown.
And so the midwife seeing this and everyone's kind of getting quiet, but I just think, you know, they're being, I had all the lights off. I had my cello music on, you know, everyone's just being Zen. So I can bring forth this life into the world. , she pulls her up on my chest and I start to pull her up towards me and the midwife's like, no, no, no, stop.
So as I was pulling her up to me, her umbilical cord herniated as well, because she only had a 10 inch cord. Oh my word. Very tiny, very small. That's part of the condition. Tubings affected bones are affected. Um, her official diagnosis, her primary diagnosis is Pfeiffer syndrome. And we could tell from looking at her face immediately.
Something was different about her. Her face just looked different. And so, of course, my only experiences with down syndrome. So I'm thinking, Oh, it's they just miss it. It's down syndrome. And that's what I'm thinking. And okay, we'd already, you know, made peace with the fact that that was a possibility. And I didn't really think much of it.
Uh, and then the midwife's like, because of the brain thing, we need to get this child in just to be checked out. So within 45 minutes, we packed into an ambulance and I got an hour ride in the ambulance to breastfeed her, to bond with her, to connect with her before the next month came about. And had I given birth in a hospital, she would have been whisked away immediately.
We would have had no time to connect. We wouldn't have been able to latch. I genuinely believe that that was us being protected, was us not knowing, not having a pre diagnosis. For Wow. That's pretty incredible. Again, we align. I had a little ambulance ride with our sixth baby, um, where I, I did get to bond and breastfeed her at home, but she was just not transitioning super well.
Um, because she had a cord around her neck and she had a knot in the cord. So it was like double whammy for breathing while she was being born and she was over 10 pounds. So that took a hot minute to get her out. When I say hot minute, I literally mean like eight minutes, but eight minutes is a long time when you have your oxygen supply compromised slash cut off.
So when she was born, she was completely blue and floppy and they had to, you know, revive her on my chest and it was like, okay, well she's back and we're going okay, but she just wasn't, um, coming around as quickly as a home birth child ought to. So once you get to the hospital, what do you do from there?
Yeah. I mean, other than the madness of the intake and the, all right, we've got all this, which is what they do in the ER, which is where I'm assuming you went through. We did. Yes. So I am here maybe two hours postpartum, um, and being shuffled from one place to another to another, into this little room, into that little room, um, all of our family joined us.
Thankfully, my husband's, so my brother in law is a pediatric ER nurse. My sister in law is a labor and delivery nurse. And we had the midwife there, and we had his mother who has a medical background, and my mother was there. So all the family was kind of already gathered, and we all went up together. So I had people, thankfully, that knew the lingo and could help kind of dumb it down.
And I know that sounds bad, but there's a lot of language and a lot of words used in the medical community that, if you don't have a medical background, they don't make sense. And so having someone there who can help you, you know, simplify it and make it in a digestible format was really, really helpful.
But it was just for the next few hours. I would say the next 12 hours. It was one specialist after another coming in with this diagnosis in this diagnosis in this diagnosis. And, you know, this didn't fuse properly and this didn't grow properly. And so we're just sitting there. And, of course, what am I doing?
Crying, I would assume. Feeding myself up. Oh gosh. Was it because I ate the sushi? Was it because I didn't sleep enough? Was it because when I got sick early, cause I was taking care of the bigger kids, like all of that, like what, how did I cause this? And we now know it's a spontaneous gene mutation.
There's no way to really test for it. Unless you're specifically testing that gene, which they never do, cause it's super rare. So we're in the hospital at about two weeks. Six o'clock in the evening is when they they caught her heart condition again a series of wonderful blessings because her particular heart condition usually doesn't start manifesting symptoms for 48 to 36 hours.
And at that point, a child is in multi organ failure. They need multiple transplants. Um, and the outlook is just very not good. So being there in the hospital and catching it as it was happening and giving her medication to prevent it from happening and then going into heart surgery at three days old, 100 percent changed her story and changed her life.
Oh, my word. Jeez. That is heavy. So at six o'clock they packed us in another ambulance because we were at Scottish right where the neuro hub is, packed us in another ambulance and sent us to Eggleston where the cardiac teams are. Okay. So now you've instantly become not just an older mom, but a medical mom.
Like this kid is going to require a lot of therapies, a lot of intervention. How did you cope with this unknown and kind of curve ball thrown your direction? Um, at first I just felt again, ill equipped, um, incapable. I didn't know how this was going to work. I'm sitting by her bedside having not slept in 48 hours because I had just gone through labor and given birth.
And then we were in an ambulance and going to the new hospital and then all the doctors are coming and giving some information. And so I'm trying to absorb, you know, I say it's drinking from a fire hose. I'm trying to absorb all of this information. With no medical basis myself and try to help make decisions like, okay, what do we prioritize?
Is the brain more important? Is the heart more important? Thankfully, we had these great teams in place that were able to advise us and could sit down with us and go through the process so we could help make those decisions. But we really did early on rely heavily on nothing but faith and our doctors.
That was it. There was nothing else that we could do. And it was shortly after her heart surgery. I'm sitting by her bedside. I'm holding her little teeny tiny hand. Cause she was the tiniest baby I'd ever seen. And I had this moment. I just started like kind of quietly crying and praying. And because I just felt like, okay, Lord, obviously I can't do this.
So I need you to tell me how I'm going to do this. And I had this almost Mike, and I'm going to start getting emotional. I had this almost like my life flashed before my eyes. I almost felt like I was guided through every stage of my life. And shown the other side of the tapestry for a moment when all I could see growing up was the messy, I'm being called this, I'm being called that.
I have these deficits. I have these experiences, but they were all preparing me for exactly this moment. And I had no idea that this was going to happen. But it always getting me ready for it. It was teaching me patience. It was teaching me perseverance. It was teaching me learning new things. It was, you know, just all of this stuff that comes like came like crashing down on me and then I just start sobbing and I just couldn't just prayers of Thanksgiving after that.
It's just you're right. You're right. You're right. You've been preparing me. You've been with me all along even in the moments. I thought you weren't even when I felt completely abandoned for a decade. You were there. Helping me get ready for this soul who I need to steward through life. Wow. That's it. All right.
So Rosie is three now? Five. Five. Yes. Oh no. Holy cow. And you know, she's doing incredibly well, right? And the prognosis for kids with her certain condition, like what does that look like? Based off their opinion, not what the father has in store for her. Uh, originally the life expectancy of a child with Pfeiffer Syndrome was three to five years.
We were told if she makes it, if she makes it to five, her chances of reaching adulthood increased by more than 70%. So we've, we've hid that. Wow. Wow. That amazing. We hit that milestone this year and that was huge for us. We had a huge party for her. We did tie dye and all that, just all the stops, um, because it was.
a huge opportunity for us to be able to celebrate her life. And we were also celebrating one year out of the hospital. She's had no, I want to knock on wood right here, no hospitalizations or surgeries within the last year. And, um, also five years from her heart surgery. So her heart adversary was kind of all right there in the same, in the same timeframe, like within a week or two of each other.
And, um, last year was a hard year after our sixth child was born. I've been pregnant six times. We have five living Children. Um, and so baby was like two weeks old when she ended up having a series of back to back brain surgeries. She had a shunt malfunction, actually had an abscess from where her body is always trying to push her shunt out.
It just doesn't like the equipment in her head. And so She developed an abscess, which turned into a brain infection. So she was on mondo doses of I. V. Antibiotics. She was on an E. V. D. An external ventricular drain. So it's a tube that goes into her brain ventricle and drains the fluid out externally.
Also, lots of hemorrhaging. So we had bleeds that we were trying to clear out and get the infection out of there. So her body can be putting new, fresh cerebral spinal fluid into it. Um, so it's just been a journey with her, like a journey. So talking about equipping you for things that you weren't prepared for, you've also come around to have opportunities presented to you, um, via Rosie's story.
So what are you doing now that you're like, I am not qualified for, I'm not equipped for, but somehow, I mean, again, these really heavy, big things are being brought to your doorstep. Like you didn't even go looking for it. Tell us more about that.
That was a big sigh, Chelsea. We talked a lot just about like the blindsiding and, um, and our, our need to defend other people. So I have spent the bulk of my life in nonprofit work, um, raising funds for people who need help. Funds right for research for individuals with disabilities again, the Lord preparing me for this moment.
So when she was shortly after her tracheostomy was placed at 18 months old, um, an opportunity came up for me to head an organization that serves and supports families of special needs in our area. And I jumped at it. I had been an executive director, an executive director before I had done fundraising before I had done all the things that I needed to be able to do this.
And the salary was very small, which was fine. It was a local nonprofit and I needed the flexibility because of Rosie. And so it was a win win for everyone. So I accepted this position and started in it and very quickly realized the amount of FaceTime that it required and the public speaking part of it.
And. I just didn't love it. I would get nauseous and sick and anxious every time I had to get on stage, every time I had to do an interview. And so that was the one piece of my job that I really didn't like. So when it came time for me to transition to something else, I decided, whatever I do, I'm not the spokesperson.
That's not what I want to do. Lord, please take this off my plate. So of course, what comes around, but speaking engagement after speaking engagement after interview. And so that is where. The Lord is wanting me to go. And, um, it's stepping into a world that I'm not super comfortable with. I don't, again, I don't like the eyes on me.
I prefer to be like, Oh, look over there. Look at the work that's being done over there. Like I'm just here to facilitate and I want to be in the background. I don't really like being out front. And that seems to be where I'm supposed to be for whatever reason right now. So I'm leaning into it because I did sit down.
We did have this conversation. Intimate conversation last year where I said, whatever it is that you're, this was during the transition time. I had left my previous position was looking at where I was going and was like, okay, I'm just going to say yes. When you bring opportunities to me, that's what I'm going to trust that you're wanting me to do.
And I'm going to say yes and figure it out. So what are you speaking about? Primarily, mostly the parent patient experience. So I'm a parent patient advocate for an organization called Born a Hero Research Foundation, and it is specific to Pfeiffer syndrome, which is Rosie's primary diagnosis, but it has segued into some other areas that affect the entire patient experience.
Special needs disability community as a whole. We recently I think I was telling you about this. I was on an interview with the news on Thursday about some medical waivers and some programs that were implemented during covid that are now they were temporary to kind of help us get through until it was a better situation.
It's It's worse now than it was then. And now the programs are expiring and nobody wanted to do anything about it. So a group of about 150 parents across the state got together and just started advocating and sending letters and petitions and begging for something to happen. No response whatsoever. So then we started reaching out to news outlets and someone called me Thursday morning.
Mind you, they were supposed to be voting on this on Thursday and they had already told us they were not going to extend this program. News outlets showed up at my house at noon. and the news story went out at six and families started getting notification that they were going to be extending the program the following morning.
Oh wow. That is big movement very quickly. Very quickly. And again, you're advocating for the defenseless. Which started when you were young, and I'm sure your parents were like, seriously, don't do that. And you did it because that was your calling. And now, I mean, it's amazing to see how all of that is mounted to you making like huge changes in your community, like at the governmental level.
Yeah. And that's where I'm feeling called to now when I'm looking around at the deficits in our systems and the way that it's affecting our families. Not just my family, but all of these families. I hear the same struggles and the same complaints over and over and over again. And there is nothing in place to help there in our state.
I'll say there are some programs available in other states that are working models that are wonderful that we could easily implement here. Um, because we're all looking at moving. Like, where do we move? Colorado is a great one. California is a great one. Washington's a great one. There's some in the Midwest that aren't too bad.
We're looking at moving hospitals potentially because just the level of care and service in our local area has gone downhill very rapidly in the last few years. Um, access to services here is really hard. And so there's, you know, we can either go seek out where it already is, or we can try to find ways to build it here.
And that's Because our most of our support systems are here. My whole family's here. His whole family's here to be able to build it here would really be ideal. And so that's where we're moving. We've got to get these policy changes and legislative changes to make a difference on the ground level in the lives of people here.
Holy cow. So where did your first speaking opportunity arise? I think it was with Georgia State. I was on a parent panel where we were discussing with nursing and doctorate students. We were discussing the patient apparent experience so that they could understand how to approach us in a way that was more impactful, less hurtful.
One of the struggles that the medical community seems to have is that they feel like we're very combative. They feel like parents and patients are combative, and they're trying to figure out how to how to remedy that. And so having this discussion, Panel of parents come up and discuss those ways in which we are offended.
We are approached in an inappropriate way, the way that they speak about our Children. to really help them recognize our Children is people and not patient. Not another case number. Correct. No, I get that. Being in the nursing field, um, I would witness people changing, you know, the underpants of the elderly who are no longer continent.
And they would be like, Let's go get your diaper on, Mr Jones. And I thought, well, babies wear diapers. Adults don't wear diapers. So from that moment on, I completely changed the vernacular. And Of how I spoke about it, because I mean, you kind of take on what you're in the environment of so like, okay, I guess that's what we're calling him his diapers.
And I thought, well, that doesn't sound right. Mr. Jones is like an 86 year old man with tons of life experience. He's a veteran. Like, why are we infantizing him when he should be respected and revered within this community? So I just started calling him underpants. Like, Hey, we need to change your underpants because You know, that's what you do to show respect and love for people is, you know, if they're unable to clean themselves, you do that for them.
But I saw that firsthand and how they weren't being, um, they weren't being moved as often as they should be. They weren't being fed as patiently as they should be. And then they just. became another lump of cells that the medical community had to deal with rather than treating them with the integrity and respect that a human being deserves to have.
Yes. Retaining dignity is so important. There you go. And even with. Even when they're Children, I really push hard for having an interpreter in the room with us, even though my daughter is 2345 years old. No, she doesn't understand the medical terms that are being signed to her. However, if her hearing peer were in the room, they would at least have access to the language.
They would begin to start having some sort of frame of reference. And so I just felt it was so important for her to have that same opportunity. And I get the eye rolls and I get the, we'll go get the device. It's like, no, we don't need a device. You can't do this virtually. I need a human being in this room.
You're a children's hospital who treats children with major medical needs. You should have an interpreter on staff 24 7 that just should be standard across the board, and it's not, and that's something that I've been pushing for. So there's a lot of different areas where I feel like I'm pushing the medical community to do better to speak to our Children again, even if they don't understand to get consent.
Consent is huge. Do not come in poking my kid in the middle of the night when she's sleeping, we'll find a way to rouse her. And I know it's harder for them. I know it's I recognize that it makes their job more challenging. However, the impact it has to my daughter and all the other children in that hospital moving forward, I don't want them ever to just feel like, Oh, things just happened to me.
I just have to sit here and be complacent and let people touch me and poke me and do these things. And so, especially as she's getting older and older and understanding this, every trach change, it takes longer now, it takes a lot longer now, but if she's saying no, no, no. And she's covering her trach, I'm waiting.
It's okay. I'm waiting. Let me know when you're ready. And she will inevitably, okay, I'm ready and we'll take it out and put the new one in. She coughs, does her thing. It's like a two and a half second process that sometimes can take up to an hour. Wow. I mean, but she used to give her that level of respect as a human being and the dignity of Um, being like the, the sole proprietor of her own body, um, is incredible.
And you are giving her such a profound gift. Um, and you're gifting everyone else in your community too, to have this big voice that you were not supposed to have as a kid. Um, but now you're able to bring that out. That is so incredible. So what is, what are the plans going forward? For you in this new speaking, um, career that people are calling you for, like they are coming to you and saying, Hey, I want you to speak at this engagement.
You're, you don't feel equipped for it. You never wanted to do it. You met your last career because you had to put in more FaceTime than you wanted to do. So with these new opportunities, um, that people are presenting to you, like how many speaking gigs have you already done? What do you have coming up?
I've done about six in the last month and then I've got a lot. It has been, uh, the last one I did was in DC. Um, they flew me up to DC to speak to a group of people. Um, and I got to learn a lot more about policy change and met a lot of kind of movers and shakers and it's wonderful because they're all so much younger than me and they have so much information and it's really awesome to learn from someone younger than you.
I think that's a really good opportunity for anyone. If you have the chance to learn from someone younger than you who has more knowledge in a specific area, it gives you a totally different perspective than you would have learning from a peer. Okay. And these are paid opportunities, right? Am I correct?
Wow. And so moving forward, I have a couple more coming up. Um, this is one being here with you. It's really awesome. And you call me and I'm like, okay, I have to say yes. So because you're in your season of yes, season of yes. And then Rosie has one coming up. We're actually going to record it sometime in the next week, um, for a rare disease fair up in Seattle, Washington.
So she's introducing a craniofacial doctor. Who's going to talk about some of the new procedures coming out to assist with the. Changes in the necessary changes to our kids cranial structures to create space for brain growth and all the things that they need to improve their lives. So she'll be introducing him.
She'll have her interpreter there that will act as her voice as she normally does for her at school as well. And then I really don't know. I'm just waiting to see kind of where this goes. Um, I love being able to help Rosie become an even more incredible self advocate because she's already advocating for herself.
Uh, if she's got something, she has heart conditions. So when her heart starts racing, she comes over and gets an adult and puts their hand on her heart, even if the adult doesn't sign and she can't tell them what's going on. She finds ways to communicate. She finds ways to get them to know what's going on with her body so that they can intervene and assist her.
And to help her do that now more in a, in a vocal way, she is in speech therapy. She's learning how to say words. It's wonderful and challenging all at the same time because a lot of her speech is very challenging to understand because of her craniofacial differences and her trach makes it a lot harder for her to speak as well.
Um, but getting to hear her this morning, she came in. Because if the sun's awake, Rosie's awake. And so she comes in and she wakes me up and she's like, she signs to me, the sun's awake, like it's time to get up. And I was like, no, just a little bit more time. Like, I'll get you some breakfast and then just let me lay for a little bit longer.
So I went in, got her a bowl of cereal, went and laid down on the couch and she comes in and climbs up next to me and puts her hand on me and sings me twinkle twinkle little star to try to get me to go back to sleep. That is adorable. Yes. And it's surprising how good her pitch is considering she doesn't have access to sound all the time.
Wow. Okay. So is clearly a superstar. Um, I mean, her Facebook page is awesome. Um, I have seen Rosie's journey for years now and I love watching this child. She is just bursting with joy. And I mean, in fact, every time I see a video of her, it just makes me happy because she is laughing. She is smiling. She's dancing.
She's a little ballerina. She loves food almost as much as I do. And I mean, what an incredible gift she has turned out to be. I mean, a child that, um, some people in the community would consider throwaway, would consider worthless, would, you know, consider, you know, a drain on society. And yet here she is advocating for herself now and for other people that are in the same position or similar positions.
And you as her mom have been equipped to do that for her. That is incredible. And I applaud you. She's thriving. I've never seen. A child and I've got lots of kids myself and a lot of my friends have Children and but I've never seen a child with quite so much life in them, right? It just is bursting out of charisma for days.
So tell the folks. I mean, I know people are going to be so inspired to follow Rosie's journey and to support you. And if you are a medical mom, Um, within this community, I know that you are probably looking for a voice as well, and you just haven't found it. Um, but here she is, the voice coming on this podcast to say, look, there are hard things that are going to come your way and you may be ill equipped.
Just keep saying yes to these opportunities and trusting the new path that's been laid out before you. So where can we all continue or, you know, be new followers of Rosie and to watch the incredible work you're doing on her behalf? So I'm trying to be more comfortable with a more public presence. My personal page is pretty locked down.
Although if you're a friend of a friend, you can find me and you can friend request me. I usually do quite a bit of research before I accept any new friend requests. Rosie does have a page. It's Fifer Fierce on Facebook. P. F. P. F. For both of them fight for fierce and I haven't updated in a while, but I'm going to now as we're as the story is getting out there and I'm talking to more people.
And, um, you know, I'm on the phone with moms almost every day, hours at a time attending IEP meetings when I can helping people advocate for themselves for their Children and just teaching them how to do it because part of it is just a lack of confidence. You know, we don't feel like we we don't know what we don't know.
Mhm. And sometimes walking to in a room with walking into a room with other experts, you tend to feel like the weakest link, and we're not. We are as much a part of the team is anyone else in education in medical. You know, I have a different perspective, and I think of things differently than the cardiac surgeon does.
He only thinks of things or she only thinks of things. From their world, right? If you go to a holistic doctor, they're going to give you herbs and remedies. And if you go to a natural path, they're going to give you mushrooms and whatever. And you go to a surgeon and they're going to recommend surgery and you go to a psychiatrist and they're going to recommend, you know, different types of pharmaceuticals and whoever you go seeking answers, you're going to find answers from that person's perspective and specialty.
That's why we need so many different voices in these conversations. Because if one person says this and one person says that, and me as an outsider goes, wait, those two things kind of link, I'm a very integral part of this whole process as well. Every parent is. Or what happens when they conflict? Right. I mean, you've got to help be that, um, The bridge between the two pieces of information, because nobody knows Rosie better than her mother and all of the care outside of an institution is done by you and your husband.
Yep. That's incredible. All right. Well, I know that I'm a huge Rosie fan. I'm a huge Chelsea fan. You're incredible. Um, I can't wait to see what you're doing next for everybody and how you're embracing this new role as public speaker and, uh, moving forward. Moving forward, I know the laugh, if you got, if we were on YouTube right now, you should have just seen her face like, dear God, she just called me a public speaker.
Um, but maybe it'll morph, maybe it'll morph. Like I'm just saying open to that possibility too, that like, this is a small season and it's going to change into something else. I'm still holding out hope, but I'm also leaning into it as much as I can. It is going to change into something else. And it's going, that something else is going to be bigger and better than you ever imagined.
Had imagined. And I see a book in your future. Like, I see small books. Around your head right now. We've got some chapters later. There we go. There we go See, I've got I've got a sixth sense about this kind of thing about where people are going I definitely see huge things for you and Rosie in the future So thank you so much for joining us and sharing this incredible story of hope and trials turned into triumph and how you're continuing To say yes in a season of gross uncomfortability Put your nail in it, kid.
I'm proud of you. Thanks. I love you. All right. You guys, thanks so much for joining us and be sure to follow Rosie's Journey on Facebook. Um, if you're not already, already following me on Instagram, what are you doing? Get there at Tiffany Al Wicks and follow and, uh, do share this episode if you know anybody.
Um, that has a, uh, medical need or part of the Fiverr syndrome community, make sure you tag them. Um, and maybe a hashtag Fiverr Fierce. And then there's like cranial warrior, heart warrior, cardiac, all of the things. There's everyone's a warrior. Oh, that is awesome. Well, I mean, incredibly and rightfully so.
We'll put all of that stuff in the show notes for you and ciao guys. We'll see you next time. Cheers.