WEBVTT
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Welcome to this unexpected life.
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Would I have known these things about the Lord had He not put me on this path?
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I just don't know that I would have learned it as personally, as intimately as I have had I not been walking this path that I did not choose for myself, but that God has just been ever-present in the whole time.
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A podcast for parents navigating the challenges of raising a child with disabilities or special needs.
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Here we share stories of hope, resilience, and messy faith to help you embrace your journey, work through grief, and thrive in your role.
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Whether you're just starting out or seeking encouragement to keep going, this is a space where your story matters.
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Join Carrie, your storytelling companion, as we explore the hope and healing found in Jesus Christ.
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One story at a time.
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Hello and welcome back to the episode this month.
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It's October.
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This is episode 61, and it's Spina bifida awareness month.
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Spina bifida is my son's main diagnosis along with hydrocephalus, and this month I just wanted to highlight some stories around this specific diagnosis.
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Spina bifida or myelomining literally means split or open spine, and it's a neural tube defect that occurs before mom, even though she's pregnant.
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Usually there's three different forms of spina bifida, but one of the most severe forms, the myelominingesal, causes an open hole in the back, damage to nerves, and depending on the location of the spine, it will cause mobility issues, bowel and bladder function issues, and is often prenatally diagnosed through scans around 20 weeks.
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With that being said, each person with spina bifida is a snowflake, meaning no two kids are alike, which I actually think is with every diagnosis.
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All of our kids are very unique and have different variations within their diagnosis.
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So today, my guest is Mandy Rawls.
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She is wife to Dustin for 22 years and mom to Madison, who's 16, and Dylan, who's 12.
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Professionally, Mandy is in her 21st year of teaching family and consumer sciences.
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And outside of teaching, she is an active member of their church in Cookville, Tennessee, where she serves as the women's ministry leader and sings in the choir.
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In her free time, she enjoys shopping, crafting, decorating, and all things Christmas.
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Being mom to Madison, who was born with Spina bifida is what has shaped Mandy's testimony, and it's her story of God's faithfulness, how he alone deserves the glory for all he's done in the life of her special needs family.
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So today, in my conversation with Mandy, she and I walk through her prenatal diagnosis story.
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We talk a little bit about mom guilt and what it looks like to grieve the milestones when your kids don't meet them.
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We also discuss how to walk through grief and how finding a church is a survival strategy for special needs families.
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So enjoy my conversation today with Mandy Rawls.
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Well, hello, and welcome to this Unexpected Life Podcast.
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Mandy Rawls, thank you so much for being here.
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Thank you for having me, Carrie.
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So exciting to see you.
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Could you start by telling the guests a little bit about who you are, where you're from, your family?
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Sure.
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So I live in Tennessee in a little town called Cookville, which is nestled between Nashville and Knoxville.
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A lot of people aren't quite sure where Cookville is, home of Tennessee Tech, and I am a high school teacher.
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I teach family and consumer sciences, which that's just the new name for HomeC.
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We don't call it Home Eck anymore.
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Been married for almost 22 years, and no, it'll be 23 years, Carrie.
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Yikes.
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I hope my husband doesn't listen to this intro.
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Um, it'll be 23 years on our next anniversary, and we have two kiddos, Madison, who turned 16 this summer, and Dylan, who is 12.
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And Madison is our kiddo with special needs.
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She was born with Spina bifida.
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Yeah, and that's kind of what we're um gonna talk about today because October is Spino bifida awareness month.
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And uh through the years of doing a podcast, I haven't really zeroed in on Spino bifida, even though Toby has it and obviously Madison has it.
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Um, but I wanted to highlight some stories this month because I do think it's a unique um diagnosis, and each kid is very, very different within that diagnosis.
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That's one thing I've learned about every diagnosis, I think.
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Absolutely.
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Everyone is a is a snowflake, just their own unique version um of autism or spina bifida or whatever it might be.
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Um but spina bifida is one of the most common permanent disabling birth defects, according to the Spina Bida Association.
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And a lot of moms, their stories are similar.
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Um, but take us back to when you received that diagnosis.
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It was prenatal, correct?
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And just what did that mean in that moment?
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What did the diagnosis mean to you and your family?
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Well, I think part of what made our diagnosis so difficult was I had miscarried in the pregnancy prior to Madison.
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And so that was devastating in and of itself.
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And we made it to the anatomy scan for what would we would find out would be Madison, and there was just already so much anxiety about pregnancy at that point because we had lost a baby.
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And I just knew in my ultrasound to find out her gender that something wasn't quite right because the tech was just taking forever.
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And she seemed to be taking repeated measurements of the baby's head and looking at the spine, and I was so excited to be in that moment, and our baby had a heartbeat, but I just I knew something was not quite right.
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And so my OB at that time was a very jovial person and just always came through the door with joy on her face and excitement in her voice.
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And when she opened the door, I I knew because that is not how she responded when she came in.
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And so she used the words neural tube defect, which I did know what that was.
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Um, but I just could not believe what we were hearing because here I was just trying to carry my baby to term and not have any complications and and the baby just be okay.
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And so for the doctor to say things were not okay, but at the same time, she wasn't 100% sure it was a neural tube defect because the baby was in a wrong position, and that's why they were taking so many scans.
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So then that led to um seeing a high-risk specialist here in town to try and get even better, you know, angles, measurements, and that one was even worse than the first one.
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And we still didn't have a confirmed diagnosis of spina bifida.
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They actually thought it possibly was trisomy 13 or 18, but no conclusive evidence.
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And so we got sent to a second high-risk specialist that did confirm spina bifida.
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And that was that was probably a month's time span of just pure agony, of not truly knowing what was going on, but knowing something was not quite right.
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So it was devastating for us.
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Yeah, I can't imagine because mine was like boom boom in the same day, and then to wait a whole month for that.
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I mean, could you take us back to that?
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Like, what did you do through all that uncertainty?
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Well, I after the appointment where they thought it was potentially trisomy 13 or 18, I hyperventilated on the way home driving my car.
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And uh by the time I got home, it was full-blown panic attack.
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And I had never experienced one of those in my life, so I didn't even know what my body was doing.
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And my husband was like, You are having a panic attack.
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And so he had to sit with me in those, those devastating moments and just let me have it and try and calm me down.
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And I had a lot of similar moments after that in that time of just feeling just gut punched because this wasn't supposed to happen, according to me.
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I was supposed to have a typical healthy pregnancy.
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I'd already lost a baby, and now I'm losing what I thought was going to be a typical pregnancy and you know, development of my child.
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And so I can even look back on pictures, so many pictures of my time pregnant with Madison, where my eyes were were uh puffy and red because I had been crying and I just kind of lived in that state of grief, just overwhelming grief, especially in those first few weeks where we were waiting to get an official diagnosis.
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And the physician who did confirm spine bifida um was really telling us, like, you know, I can't really tell you anything about your baby's quality of life.
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I don't know what her life will be like, but she's probably not gonna do this, she's probably not gonna do that.
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And I just wish I could go back to that physician and be like, hey, look, you don't tell pregnant moms things like that.
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Those are not the words you use.
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But because of he was painting such a bleak picture, I just I could not find any joy in those days about being pregnant.
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I there was just no joy for me to find.
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I'm a little ashamed at that because I do trust the Lord and in all of his plans and purposes for my life, but it was it was just devastating, truly.
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Yeah.
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Thank you for just having the courage to say that.
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And you know, I just and I want to encourage you, our faith in Jesus doesn't mean we always have joy.
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And I think I had a similar experience.
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At one point in my pregnancy, I thought it was miscarrying.
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And you know, I was up in the middle of the night, I hadn't felt the baby move in just hours a full day.
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And you know, I'm Googling like 24 weeks, like when do you bury the baby?
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Like, just all of these things, and it does take away so much of the joy that you know, you no longer have a due date, you have a surgery date, you know, like just all of those things that just pull the rug out from under you.
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So, one of the things that you shared with me is how there were some ways that you can look back and see that God had prepared you beforehand.
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And my jaw hit the floor because I have a I have similar stories too of I can see little moments of God preparing us, even the day of the diagnosis.
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I looked at my husband and said, I would tell you to go to work, but I think you need to be here.
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And I even said to him, I don't think anything's wrong, but I just feel like you need to be here because I had an ultrasound and then we were waiting to see the doctor and similar thing.
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It was taking so much time, I think, because they were trying to read the scans and figure out how to tell us.
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So, what were some of those ways that God prepared you and how has that framed your view of him?
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Well, when I was in high school, through some experiences and connections with some extended family, had become really, I guess, intrigued by birth defects and research surrounding birth defects.
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I had wound up being kind of close to a little girl who was born with fetal alcohol syndrome and really was just kind of becoming passionate about learning about it and what about birth defects can be prevented?
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Are there things that we can or can't do?
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And so, my senior year of high school, I was in a class called service learning, and we had to pick a community agency to go serve at two to three times a week.
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We would get credit for it, but then we were giving of our time and we were going to create projects about what we learned.
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And so, because I was getting so passionate about this, you know, quest to understand more about birth defects, I asked to be placed at the March of Dimes, which I'll be honest, I don't know if the March of Dimes still exists.
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I feel like I don't hear anything about them anymore.
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But we had a very active chapter in Chattanooga where I grew up.
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So I very easily connected with them and got connected to work in their parent education department, where I would pull all of these resources about specific birth defects and collate them in a folder, kind of package it up all nice and neat so that if a parent came and needed more information, had just gotten a diagnosis, then we could hand them these packets.
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And so when I sat down to prepare my first round of packets, it was about spina bifida.
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And so I just had at my fingertips all of this research, um, all of these documents, all of this medical information about what a neural tube defect is, what kinds there are, what do we typically see in terms of the symptoms for a child.
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And so I was gaining all of the head knowledge about spina bifida.
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And I had no clue, no clue that I guess roughly about 10, 12 years from that date is when I would be getting a spina bifida diagnosis for my daughter.
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And so, in that moment, truly, when the doctor opened the door and she came in with that long look on her face and said, neural tube defect, I just like took an instant jump back in time to sitting at that desk at the March of Dimes where I was looking at all this research and I was like, I know what this is.
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And so God was gracious in that time to kind of soften the blow because I didn't have to do the research.
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I didn't have to go to the internet, which is a very scary place when you're trying to be a keyboard doctor.
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And I didn't have to do any of that because I knew exactly what it was.
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My husband did not.
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And so there were things that he kind of had to gain some understanding about, but I can just look back on that and see that that was just a small way that God had prepared my heart by preparing my mind to understand what was happening in my body with my baby.
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And so I think it just revealed so much of his character about how he has plans for us.
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Um, and he is working in ways that we cannot see.
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And again, I I never would have guessed that as a 17-year-old in high school, that he would use something as small and seemingly insignificant as stuff and packets to be with me and minister to me as an adult, getting that diagnosis for my child.
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Yeah, absolutely.
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Absolutely.
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Um, I love it made me chuckle when you said the keyboard doctor, because we we all do that, don't we?
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Oh, I in that time, I will I will tell you, in that time where we were so back and forth and we weren't sure could it be, it might not, I I did do that.
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And I'll I learned very quickly that was an unhealthy habit.
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And so I have even shared with moms who have gotten recent diagnoses to please, please stay away from the internet.
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And when you have your questions, ask your physician.
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Don't even ask a mom who has a child with spina bifida because it's probably not gonna be the same.
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I know a lot of those tears that I had in those early days came from me trying to investigate and learn some more because there was just so much uncertainty from her doctors that we had at the time.
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So yeah, that's just that's not a healthy practice.
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Yeah, absolutely.
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Can be hard.
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So they set you up for the birth of this baby.
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But the most common form of spina bifida is the one that is the open hole in the back.
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There's various forms.
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So there's damage to the spine, there's damage to the nerves, you have to have surgery close to birth to close that open hole.
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And a lot of times kids need a shunt unless you have the prenatal surgery, which is becoming more and more common.
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Um, I think our kids were a little too early for that.
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I know it was just in the research stages.
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When I was pregnant with Toby, he's gonna be 20 in December.
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But I guess walk us through those first few years of her life.
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What did that look like for you?
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So she had her spinal closure surgery the very next morning after she was born.
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And up to that point, we had been watching to see prenatally if there was any dilation in the ventricles that might indicate she would need a shunt.
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And there had been concern, and then the concern dwindled.
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So I thought, my baby is good.
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Like my baby does not need a shunt.
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And so we did the closure surgery.
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We were in the hospital for I think it was eight days.
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She was in the NICU for eight days, came home, and on 4th of July weekend, of course, on holiday weekend when none of the surgeons were working, she had a medical emergency because of the spinal fluid that was compressing her ventricles.
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And we wound up going into the ER to get admitted over the weekend, just waiting for the surgeons to come on that Monday after the holiday.
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And sure enough, her little ventricles were so dilated and they believed they could see some scarring on the back of the eyes because of it.
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And I just felt so awful because I can look back on pictures of her in those first four weeks.
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And I thought she just had that little shrivelly newborn look about her because that's how newborns are supposed to look.
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And having never had a baby, didn't have any frame of reference, but her little eyes were so sunken and she had really dark circles.
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And her being lethargic, I also thought was sleepy baby, just fed the baby, didn't know what to expect.
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And so I carried a lot of mom guilt right after that surgery because what did I miss where I could have gotten her there sooner?
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But I just truly had no frame of reference.
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And so when she was four weeks old, she had the brain surgery to get the VP shunt, and that was that was pretty brutal.
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They gave her nothing but Tylenol with codeine to recover.
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And so she just screamed almost like somebody was pressing a button every two to three minutes all night long while we were admitted in the hospital.
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And she looked possessed, like her eyes were black.
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Um, I think she was just in so much pain, and that is all they would give her.
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And so that was a really rude awakening into parenthood.
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But then she became a whole new baby after that.
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And that's where we really saw the power of getting that fluid off of her brain.
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And she started to fill out.
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She seemed more alert and kind of tracking with us.
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And so I'm so thankful that we were able to remedy that.
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But I was just so hopeful that that was not going to be her reality.
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And so all of the research tells you all the things that you could typically expect with Milo Meningia seal.
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But I was like, nope, not my baby.
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She's doing good.
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We're not seeing those signs.
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And then slowly but surely they started to pile up.
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And her biggest issues that we had once we got over that hurdle with the shunt was just the bladder dysfunction, just terrible bladder dysfunction and horrible reflux into the kidneys.
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And so pretty early on, we identified that she had kidney disease and there was scarring of both of the kidneys.
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And so her first surgery post-birth was when she was two to get a vesicostomy.
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And that was a nightmare just to allow urine to freely drain from her body.
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And then when that failed, it led to a bladder augment when she was six with getting a chake tube.
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And then that ultimately failed.
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And so when she was 13, she got ostomies.
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And so I know I'm like fast forwarding, but just to just to paint the picture of, I was so hopeful that we could sidestep some of those symptoms.
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And it almost seemed to be like the dominoes were falling right in the path of every single complication that we could have with spinobifidus, she seemed to be having it.
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And that was nothing to mention of the mobility issues we were also noticing.
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But I wasn't as concerned.
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Like I just needed her to be healthy.
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And so the walking will work on that, but is she healthy?
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And at one point she was diagnosed as failure to thrive.
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And that was just so hard to see her just really not, she wasn't thriving.
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I mean, that's just simply put, you know.
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And so that was that was hard when she was in the two to three-year-old range and and diagnosed as that.
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So those were those were hard years trying to figure it all out and then find the solutions for all of these medical complications that were piling up.
00:21:12.799 --> 00:21:19.440
And I I know you know, I mean, you've you had similar plus some, so you know exactly what I'm talking about.
00:21:20.000 --> 00:21:20.400
Yeah.
00:21:20.720 --> 00:21:33.759
I want to go back to the one thing you mentioned about looking back at pictures and feeling that mom guilt because I think a lot of moms listening can relate to that guilty feeling of like, am I missing something?
00:21:34.000 --> 00:21:48.319
And I think we put a lot of pressure on ourselves to keep our kids alive, to care for them, which it is, you know, obviously our role as parents of kids with disabilities and special needs.
00:21:49.519 --> 00:21:56.720
But can you look back and say, Oh, there was this one thing that helped me release the guild, or was it just time?
00:21:57.039 --> 00:22:07.519
Because I'm just thinking about that mom who's just really, really Stuck in I miss that and it's my fault that we ended up here and my child's had lasting effects from this.
00:22:07.839 --> 00:22:16.400
How do we let that go and let the Lord be sufficient for those moments that we can't I mean we're human, we can't catch everything.
00:22:16.960 --> 00:22:17.440
Sure.
00:22:18.240 --> 00:22:37.839
Gosh, that's hard because I think, I mean, God just wired moms differently, anyways, for us to be so deeply feeling and to be so concerned with care and trying to be the best that we can be for these these babies that we love so much.
00:22:38.079 --> 00:22:40.400
I I don't know that I have a great answer.
00:22:40.559 --> 00:23:02.559
I do think time, and I shared with someone once that just trying to always take whatever it was, whatever the problem of the day was in terms of gonna need surgery, gonna need this therapy, gonna need to pursue this route, to take that before the Lord and just bathe it in prayer and ask for peace.
00:23:02.720 --> 00:23:05.680
Beg him to give us peace about that.
00:23:06.000 --> 00:23:13.519
And he has always been able to confirm in me through the Holy Spirit, you know, this is what you need to be doing.
00:23:13.680 --> 00:23:22.720
There was there was only one surgery that Madison has had where I really struggled and it took a while for that peace to come.
00:23:22.960 --> 00:23:28.960
And that was what I felt like was her most life-changing surgery to get to ostomies when she was 13.
00:23:29.200 --> 00:23:32.720
But just to beg him for that peace and he will provide it.
00:23:32.799 --> 00:23:34.799
And sometimes he does that himself.
00:23:34.960 --> 00:23:36.640
Sometimes he uses other people.
00:23:36.880 --> 00:23:47.039
Sometimes he confirms what we should be doing through information that a surgeon can provide or through the comfort that a doctor can provide.
00:23:47.119 --> 00:23:58.400
We have been so blessed with world-class physicians that have been able to answer questions and give us peace in these decisions and to really empathize and be like, look, I get it.
00:23:58.559 --> 00:24:00.799
You are making tough decisions here.
00:24:00.960 --> 00:24:03.680
And so we we want you to have as much information.
00:24:03.839 --> 00:24:05.440
We want you to ask the hard questions.
00:24:05.680 --> 00:24:10.240
And I think that's just been really humane of them to do that, very compassionate.
00:24:10.400 --> 00:24:13.200
And so I think the Lord has worked through them as well.
00:24:13.440 --> 00:24:21.599
But I think the time and bathing everything in prayer is really the only way I feel like I've been able to kind of get past those things.
00:24:21.759 --> 00:24:23.200
But like you said, we're human.
00:24:23.359 --> 00:24:27.599
And so it it's it's bound to happen.
00:24:27.920 --> 00:24:28.240
Right.
00:24:28.400 --> 00:24:29.599
It's so it's so good.
00:24:29.759 --> 00:24:34.720
And to feel like you have the space to they're the doctor, ask them the questions.
00:24:34.880 --> 00:24:38.480
I know through the years they hate this question, but this was your child.
00:24:38.640 --> 00:24:39.519
What would you do?
00:24:40.160 --> 00:24:43.680
Yeah you know, they always look at me like, really, you're gonna ask me that question?
00:24:43.839 --> 00:24:44.480
You're gonna go there?
00:24:44.559 --> 00:24:47.359
I'm like, no, I am gonna go there because we're just stuck.
00:24:47.440 --> 00:24:49.920
We're not really sure what to do in this moment.
00:24:50.319 --> 00:24:59.759
I think one of the hardest parts of the journey with Spina bifida is all those milestones that our kids either don't reach or they reach late.
00:25:00.079 --> 00:25:04.400
We're grieving those moving into adulthood.
00:25:04.640 --> 00:25:08.000
Their adulthood looks very different a lot of times.
00:25:08.160 --> 00:25:17.200
I know I'm I'm dealing with that right now and wrestling with am I limiting my child with what I think their future can be?
00:25:17.359 --> 00:25:20.640
I mean, am I not giving them enough autonomy over certain things?
00:25:21.200 --> 00:25:38.799
So maybe how have you learned to just kind of navigate all of those things without just constant, I guess, comparison and jealousy and and anger even that your child isn't isn't like a neurotypical reaching those milestones neurotypically.
00:25:40.480 --> 00:25:53.759
I think I think part of navigating it is it's a very, I guess, basic uh notion, but I cannot control those things.
00:25:54.000 --> 00:25:58.400
And it has taken me Madison's whole life to learn that.
00:25:58.480 --> 00:26:05.839
And that was the one thing I feel like God needed to teach me that I had not learned before her, that I'm just not in control.
00:26:06.079 --> 00:26:18.799
And so if I'm not in control of when she's gonna reach those milestones, if she's gonna reach those milestones, then I need to be focusing my energy on something else that I can.
00:26:19.039 --> 00:26:23.759
I can focus on how are we going to celebrate the ones that you do make.
00:26:24.079 --> 00:26:37.680
We had a down with diapers party when she finally was able to stop wearing diapers because we were gonna start being able to control her bladder and her bowels with the chate tube and the stoma to cath with.
00:26:37.759 --> 00:26:40.720
And so that was that was a big deal for us, and we celebrated that.
00:26:40.799 --> 00:26:50.559
And I'm sure there's not a lot of six-year-olds that would be celebrating getting out of diapers because they are out of diapers already and their families, that's not a big deal.
00:26:50.720 --> 00:26:52.640
But for us, it was huge.
00:26:52.880 --> 00:27:02.799
And so trying to focus on what I can really manage for her instead of those things that are beyond my control.
00:27:03.359 --> 00:27:16.319
When things kind of started taking the shift in her care towards these ostomies that she was going to be getting, and she became a wheelchair user, and that was new to us.
00:27:16.480 --> 00:27:27.200
It just really kind of started to feel like I'm not sure that living independently is a reality for Madison in the in the near future.
00:27:27.359 --> 00:27:29.920
And I don't think that's me trying to be cynical.
00:27:30.319 --> 00:27:40.480
I just don't see the proof of it in how she's managing versus what we're managing and even just some of the physical limitations that she has.
00:27:40.640 --> 00:27:46.960
And so I really just was struggling with, I don't, I don't know that that is ever going to happen for her.
00:27:47.119 --> 00:28:00.160
And so, in an effort to try and, you know, maybe find the the positives and and maybe the flip side of that, we wanted to give her the idea that she had like an apartment.
00:28:00.319 --> 00:28:08.319
And so we painted her bedroom door and put numbers on it and put a wreath and a mailbox on it.
00:28:08.720 --> 00:28:12.559
And um we painted it pink to match her bedroom.
00:28:12.880 --> 00:28:17.279
And it looks like you're walking up to an apartment when you come to her bedroom door.
00:28:17.599 --> 00:28:31.359
And I just I wanted it to feel like this is your space, you belong here, even if this is a space that you're gonna live in for a long time, even even if it's not outside of our home, away from us.
00:28:31.519 --> 00:28:36.799
And so just trying to maybe find the positives there.
00:28:36.960 --> 00:28:48.160
And our mutual friend Becky Davidson with Rising Above, she calls it like the flip side, finding the flip side of my daughter is not driving, even though she just turned 16.
00:28:48.319 --> 00:28:54.880
Well, I don't have to pay insurance premiums to add a teen driver to my insurance bill, you know?
00:28:55.119 --> 00:28:59.200
And I don't have to worry about her running the roads and getting into accidents.
00:28:59.440 --> 00:29:07.119
And so just trying to reframe those things, I think, has been helpful for me in trying to cope with those missed milestones.
00:29:07.440 --> 00:29:09.119
Yeah, absolutely.
00:29:09.759 --> 00:29:16.160
Are there times when you have to help her reframe some of those things?
00:29:16.400 --> 00:29:18.960
I'm in this moment right now with our son.
00:29:19.119 --> 00:29:36.000
How do I help him walk through his own grieving and the reality that, you know, he's watching he has two older brothers and a younger sister, so he's watching his oldest brother get married, and then his younger sister, three years younger, got her driver's license, she's driving, he's not.
00:29:36.559 --> 00:29:46.079
It can just be this tricky balance of all of a sudden he's looking at the world going, wait a second, I'm not doing that and that and that.
00:29:46.400 --> 00:29:47.519
Has she experienced that?
00:29:47.680 --> 00:29:49.279
And how are you helping her?
00:29:49.359 --> 00:29:51.920
How are you and your husband helping her navigate that?
00:29:52.880 --> 00:30:03.119
Yeah, she she has when we had that surgery when she got the ostomies, that's that's been kind of a real dividing line in her life.
00:30:03.279 --> 00:30:09.200
Before ostomies and after ostomies, is is kind of how we have viewed things.
00:30:09.359 --> 00:30:16.400
And when she came home from hospital with that, I mean, she had just had major abdominal surgery.
00:30:16.720 --> 00:30:19.359
And um, she was in a lot of pain.
00:30:19.680 --> 00:30:24.000
And it was the first shower that we gave her.
00:30:24.319 --> 00:30:27.359
It was, I mean, it was a disaster.
00:30:27.599 --> 00:30:30.720
It probably took us 45 minutes.
00:30:31.039 --> 00:30:34.559
We were carrying her in there, both of us.
00:30:35.119 --> 00:30:38.960
Oh my goodness, I don't imagine that it could have gone any worse than it did.
00:30:39.119 --> 00:30:42.160
And by the time we were done, she was in tears.
00:30:42.319 --> 00:30:43.759
I was in tears.
00:30:44.160 --> 00:30:50.480
And so I got her back to the bed to dry her off, and everything was peeling off from the shower.
00:30:50.559 --> 00:30:52.880
So we're gonna have to redress everything.
00:30:53.200 --> 00:31:02.720
And she just broke down in her tears, and she was like, How will I ever live on my own if this is what it's like to take a shower?
00:31:02.960 --> 00:31:04.319
And she was 13.
00:31:04.480 --> 00:31:09.359
It just killed me that that's what was going through her mind at that time.
00:31:09.920 --> 00:31:21.119
And the only thing I could do, because I really feel like this is what the Lord has had to press into me, is when he talks about in Matthew about we can't worry about tomorrow.
00:31:21.359 --> 00:31:23.599
You know, look at the birds of the air.
00:31:23.759 --> 00:31:28.640
They don't have to worry about what they're gonna eat or what they're gonna drink or where they're gonna sleep.
00:31:28.720 --> 00:31:33.759
And so if he can care for the birds of the air, how much more does he care for us?
00:31:33.920 --> 00:31:38.720
And that's all I could tell her in that moment is I was like, I don't know, babe.
00:31:38.880 --> 00:31:40.559
I don't have a clue.
00:31:40.799 --> 00:31:45.920
I don't know if there is an answer to that, but we're gonna not worry about that right now.
00:31:46.079 --> 00:31:51.440
We're just gonna focus on today and getting you cleaned up and get this taken care of.
00:31:51.680 --> 00:32:00.640
And I feel like we've had to have that same kind of conversation since then several times of I don't know that we should be thinking that far ahead.
00:32:00.720 --> 00:32:14.960
That I I learned that also very early on of to not try and make a lot of plans in my mind and not try and frame a lot of expectations because I would wind up devastated and feel like a failure, and she would too.
00:32:15.200 --> 00:32:28.880
And so, just in that moment though, after that, just seeing her so broken about it was just trying to encourage her that God has a plan and we don't know it right now, and we're not gonna worry about it for tomorrow.
00:32:29.039 --> 00:32:35.440
Let's just focus on what we can do right now and today, and he will provide, he will make a way in those circumstances.
00:32:35.759 --> 00:32:36.319
Yeah.
00:32:36.640 --> 00:32:37.519
And I love that.
00:32:37.599 --> 00:32:39.440
It's a good reminder for me to hear that too.
00:32:39.519 --> 00:32:41.200
Of don't look too far ahead.
00:32:41.279 --> 00:32:42.960
Like God holds tomorrow.
00:32:43.200 --> 00:32:44.880
Let's just focus on today.
00:32:45.039 --> 00:32:47.279
What is he calling us to do today?
00:32:47.519 --> 00:32:52.640
And then also modeling that for our kids and and total dependence on the Lord.
00:32:52.720 --> 00:32:56.960
And you know, you talked about earlier how we are not in control.
00:32:57.519 --> 00:33:00.720
And um, I think our kids are learning that too.
00:33:00.960 --> 00:33:02.799
Like, we're we're not in control.
00:33:03.039 --> 00:33:05.119
God is, and he's gonna hold us.
00:33:05.599 --> 00:33:13.359
So I want to switch gears a little bit and talk about the community and especially the church community around you.
00:33:13.839 --> 00:33:16.000
How has your church community come around you?
00:33:16.160 --> 00:33:23.599
And how is it one of those strategies of that we need community in order to walk this journey with our kids?
00:33:23.920 --> 00:33:24.480
Yeah.
00:33:24.799 --> 00:33:33.359
So you said it best uh off the mic when you said that having a church community is a survival strategy for special needs families.
00:33:33.519 --> 00:33:35.279
And I could not agree with that more.
00:33:35.519 --> 00:33:37.359
You hit the nail on the head there.
00:33:37.920 --> 00:33:57.359
And I think for us, um, when we moved to Cookville, we were here for I guess it was four years before Madison came along, um, where we were digging in and planting roots at our church and getting involved.
00:33:57.440 --> 00:34:03.519
And it was just Dustin and Mandy, and you know, finding community there with just the two of us.
00:34:03.680 --> 00:34:06.880
And then when we miscarried, they rallied around us.
00:34:06.960 --> 00:34:15.679
And then when we got Madison's diagnosis, truly at that time, there was nobody else in our church body that was walking a similar path.
00:34:15.840 --> 00:34:24.880
And so it it felt as though the church was literally walking that road with us and carrying our burden with us.
00:34:25.119 --> 00:34:32.000
And because we live in Cookville and we have no family here, both of our parents live about an hour and a half from us.
00:34:32.239 --> 00:34:33.840
So they were our family.
00:34:34.000 --> 00:34:36.800
There was no one else but them to lean on.
00:34:37.039 --> 00:34:39.119
And they just did it so beautifully.
00:34:39.199 --> 00:34:59.679
And they have the whole time since I found out I was pregnant with her and it was going to be spina bifida, and I was sobbing at the altar to just this summer when she had another pretty intense surgery and recovery phase, and have been the hands and feet of Jesus for us time and time and time again.
00:34:59.760 --> 00:35:07.199
And I have told some of my closest friends, I was like, I know you've got to be tired of us needing something, but I need you.
00:35:07.440 --> 00:35:15.519
I know that, I know that you say Madison's name, and I know you lift our family's name up in prayer all the time, but I still need you to after all this time.
00:35:15.760 --> 00:35:40.400
And I'm just so thankful that they've never stopped and they've just been doing life right along with us, and they have made us feel as though there is no difference between us and any other family that's in our church body, just because we have to do things differently, or we maybe have to miss a little here or a little there, you know, when there's been hospital stays, but it it just has been, I I don't know where we would be without them.
00:35:40.480 --> 00:35:54.960
And that's not to say our families have not been just amazing and supportive, not would never imply that, but because this church is here where we are and doing life with us, they have just been everything to us.
00:35:55.280 --> 00:35:55.840
Yeah.
00:35:56.159 --> 00:36:02.239
I think one of the things I hear you saying is they've just been willing to walk through life with you.
00:36:02.320 --> 00:36:10.000
You know, I was gonna ask you like, what are some of the ways someone's listening to the podcast and they don't have a child with disabilities?
00:36:10.320 --> 00:36:11.760
What are the ways that they can help?
00:36:11.840 --> 00:36:13.039
But they didn't walk away.
00:36:13.199 --> 00:36:14.639
And I think that's one of the fears.
00:36:14.800 --> 00:36:19.920
I know personally that's a fear that I have sometimes is that this is a lifetime thing, right?
00:36:20.079 --> 00:36:23.199
My friend Jonna Hensley says, forever nesting.
00:36:23.280 --> 00:36:25.440
There's a possibility we're gonna be forever nesting.
00:36:25.519 --> 00:36:30.559
And we have friends who are close to empty nesters, they're traveling, they're doing all these things.
00:36:30.719 --> 00:36:39.920
And I actually looked at my husband the other day and I said, Do you sometimes feel just a little bit wish that we could do that and be in that space?
00:36:40.079 --> 00:36:50.639
And he said, He said, Yeah, it can be really hard because our life looks very different, and our kids might live with us till till we go to glory.
00:36:51.199 --> 00:37:05.440
But I think when people are willing to be there for the long haul, and and also the other thing that you said is courageous enough for you to say, I'm so glad you're here, like I need you.
00:37:06.000 --> 00:37:13.920
A lot of times families aren't willing to be vulnerable and say, I need help and this is what I need, and be specific.
00:37:14.079 --> 00:37:19.440
Is there anything you would add that's been helpful for supporting your family through this journey?
00:37:19.840 --> 00:37:31.840
I think part of the reason why our church family has been so in it with us is Dustin and I are both very outspoken, extroverted people.
00:37:32.480 --> 00:37:36.079
Never met a stranger and we overshare.
00:37:36.159 --> 00:37:39.280
I mean, we we joke about that, is that we overshare.
00:37:40.639 --> 00:37:50.159
But that is how, like you said, just like opening up your circle, you've got to invite people in because it's too much.
00:37:50.400 --> 00:37:54.000
It's just too much to bear alone.
00:37:54.239 --> 00:37:56.159
And we have not held back.
00:37:56.480 --> 00:38:05.360
And our our friends have wanted to be right there and tell us what is the dirty, low-down detail here about what's happening to her body.
00:38:05.599 --> 00:38:08.559
And can we come help do something?
00:38:08.800 --> 00:38:29.760
You know, I would say if you have any listeners that don't have a child living with special needs and they're just wondering how to be a good friend, is to just ask and not let that family off the hook when they say, Oh, no, we're good, we're good, um, because our friends have been persistent.
00:38:30.079 --> 00:38:35.760
And to the point that there have been times where we didn't say anything and they just did it.
00:38:35.840 --> 00:38:37.360
They just, they just acted.
00:38:37.519 --> 00:38:49.360
So, I mean, that was simple things like one time we came home from the hospital and they had planted our flower bed full of flowers so that we had something pretty to look at um while we were inside.
00:38:49.440 --> 00:39:01.199
And they've bought our groceries and they've mowed our grass and they've done a lot of other beautiful, profound things for us that I won't share, but as I'm sure you've experienced too.
00:39:01.360 --> 00:39:07.760
But uh it's because I feel like we've not been afraid to share those things with them.
00:39:08.320 --> 00:39:11.920
And they just kept asking, and they never would take no from us.
00:39:12.079 --> 00:39:12.880
We don't need help.
00:39:13.119 --> 00:39:19.840
Like, for example, this surgery that Madison just had this summer, she was gonna be having it the last two weeks of our school year.
00:39:19.920 --> 00:39:21.519
So I was still teaching.
00:39:21.679 --> 00:39:25.280
It was actually a pretty intense uh time of year for me.
00:39:25.599 --> 00:39:32.880
And she was having this surgery, and I was only gonna get to stay with her in the hospital for two days, and then my husband would be there the rest of the time.
00:39:33.119 --> 00:39:37.119
And one of my friends inquired, she was like, Well, we're gonna do a meal train.
00:39:37.199 --> 00:39:39.920
I was like, No, I was like, I'm fine.
00:39:40.000 --> 00:39:41.199
There's nothing wrong with me.
00:39:41.360 --> 00:39:44.480
There's no reason why I can't cook and provide dinner to my family.
00:39:44.559 --> 00:39:47.760
And they're like, no, we're still doing a meal train.
00:39:47.920 --> 00:39:52.480
And I was very uncomfortable with it, and I really pushed back and fought them on it.
00:39:52.559 --> 00:39:56.239
And they were like, just let us love your family.
00:39:56.480 --> 00:40:05.519
And if I have had that said to me once, I've it's probably been a hundred times, and I've I've had to start letting it sink in, is to just let them love on us.
00:40:05.599 --> 00:40:15.679
And if that's how they know to do and all they know to do, then who am I to deny that the opportunity for them to share God's love with us?
00:40:15.760 --> 00:40:19.760
And so I did, I I didn't want to, but we we set up the meal train.
00:40:19.840 --> 00:40:22.079
And do you know that it was the most amazing thing?
00:40:22.320 --> 00:40:24.079
And it wasn't because I wasn't capable.
00:40:24.239 --> 00:40:26.239
They were like, we just don't want you to worry about it.
00:40:26.320 --> 00:40:31.679
We know that her recovery is intense, and so let us take this off your plate.
00:40:31.920 --> 00:40:40.800
And they did it so well, and they've been doing that her whole life in one season or one trauma-filled moment to another.
00:40:40.960 --> 00:40:42.719
That's that's how they've been the whole time.
00:40:42.880 --> 00:40:43.039
Yeah.
00:40:44.000 --> 00:40:44.719
I love that.
00:40:44.880 --> 00:40:58.960
We go to a family camp every summer where the director says we look most like Jesus when we serve, and when we don't allow other people to serve us, we're not allowing them to look like Jesus and act like him and serve like him.
00:40:59.360 --> 00:41:02.159
And so I think that's really, really important.
00:41:02.719 --> 00:41:03.039
Yeah.
00:41:03.599 --> 00:41:10.320
So as we wrap up, I want to talk a little bit about advocating for your child, which we've had to do medically, right?
00:41:10.480 --> 00:41:14.400
For many years, but particularly within the school system.
00:41:14.960 --> 00:41:23.760
What do you wish every parent of a child with disabilities understood is their role as an advocate and how has that played out in your journey?
00:41:24.079 --> 00:41:32.719
Well, I think it's important that parents know that if you're not advocating, there's a good chance that nobody else is.
00:41:32.960 --> 00:41:36.239
And so you you gotta do it.
00:41:36.480 --> 00:41:54.079
And even if it means that you might temporarily make some enemies or step on some toes, that is your job to fight for the quality of education that your child deserves, just like any other child that's in that school.
00:41:54.320 --> 00:42:01.599
And so I that has been a particularly challenging task for me as a teacher and as a parent.
00:42:01.840 --> 00:42:11.920
And so I can look back on some situations where I felt like I could not fully advocate for her without becoming the villain in my school system.
00:42:12.159 --> 00:42:17.119
And so I had to defer to my husband a lot and be like, I'm gonna need you to fight this battle.
00:42:17.280 --> 00:42:19.360
I'm gonna need you to go toe-to-toe on this one.
00:42:19.519 --> 00:42:28.639
And I'm just gonna have to be a silent observer because the mama bear is wanting to come out and it would not be good for me professionally.
00:42:28.880 --> 00:42:32.239
But a lot of people are not in that situation.
00:42:32.400 --> 00:42:38.000
But I would say that I think it's really important to know what your rights are.
00:42:38.480 --> 00:42:45.920
And every IEP meeting that you go to, you should be asked, do you know what your procedural safeguards are?
00:42:46.159 --> 00:42:49.599
Have you been provided with a copy of your procedural safeguards?
00:42:49.840 --> 00:43:03.199
And if a parent's answer to that is no, then they need to halt, they need to stop, and they need to become aware of what is within their right to ask for so that they're going in as informed as possible.
00:43:03.280 --> 00:43:19.360
Because here's what I see as a teacher on the other side of the table is that these teachers and these case managers are getting called into meetings right as they were, you know, teaching and doing other things, and then they've just pressed pause on those to run into this meeting.
00:43:19.679 --> 00:43:25.760
They're not really, their head's not in it because it's just this is the task of the moment for them to do.
00:43:25.920 --> 00:43:34.639
And so are they really coming into that meeting holding your child's needs and goals in the forefront of their mind?
00:43:34.800 --> 00:43:43.519
And the answer is probably no, because of the pace that teachers have and the expectations and the responsibilities that they have.
00:43:43.679 --> 00:43:53.840
That doesn't excuse a teacher or a case manager from giving their full attention, I'm just being honest, of what it's like when we sit down at the table to those meetings.
00:43:53.920 --> 00:44:09.119
And so a parent walking in not knowing what their rights are and What their child needs and should have access to is really just, you know, you're kind of behind the eight ball already if you don't know.
00:44:09.280 --> 00:44:13.199
And so I would just really encourage parents to do their homework.
00:44:13.519 --> 00:44:50.960
And if your child has a specific diagnosis, you know, going to legislation online, reading what really is in the IDEA to know what is supposed to be provided, understanding the civil rights laws about discrimination for people with disabilities, those are important pieces of the puzzle that I think parents need so that they can recognize if there are things starting to take a turn, or if you were starting to feel like maybe the child's concerns and needs and wants are not being prioritized.
00:44:51.119 --> 00:44:56.719
I don't think any of the people that are sitting in those meetings are thinking, oh, we're gonna pull a fast one on them.
00:44:56.880 --> 00:45:01.679
You know, we're gonna, we're not gonna do this and we're not gonna provide these accommodations.
00:45:01.840 --> 00:45:03.679
No, it's it's not that at all.
00:45:03.920 --> 00:45:12.480
It's that it is hard sometimes to make a distinction between this child on paper and the five others that they've got meetings about in the same day.
00:45:12.800 --> 00:45:19.440
So the parents really gotta come to the table with as much information as possible.
00:45:19.760 --> 00:45:20.159
Yeah.
00:45:20.480 --> 00:45:26.159
Is there a website or anything that you have followed or used to help educate yourself?
00:45:26.559 --> 00:45:32.960
Well, in some of the classes that I've taught in the past, I was teaching students about becoming teachers.
00:45:33.039 --> 00:45:40.480
And so we would always investigate the 504 act and become familiar with the IDEA.
00:45:40.719 --> 00:45:52.480
And ADA is fine to learn about, but that's really more about access to physical spaces, and that's not necessarily a priority in the educational space.
00:45:52.559 --> 00:46:01.199
I mean, it can be, it is, but it's not as prominent as knowing educationally what you can ask for and what you can hold schools accountable to.
00:46:01.360 --> 00:46:20.239
I don't have like a particular website just you know that would pop right off the top of my mind, but looking at uh the 504 Act and IDEA is helpful, but then every school system should be able to provide those procedural safeguards in writing for them to look through.
00:46:20.559 --> 00:46:21.199
Yeah.
00:46:21.679 --> 00:46:28.960
Um, even with homeschooling, my son's had an IEP because we're unique in Ohio where there's scholarship money.
00:46:29.039 --> 00:46:40.079
If you're homeschooled and have an IEP, but even like I would get sent it's a packet, I get a paper, you know, every time that we would have an IEP meeting, and when he was in school when he was younger.
00:46:40.239 --> 00:46:43.679
And I I do think that that is it is really, really important.
00:46:45.360 --> 00:46:55.039
So as you look back on the past 16 years of your unexpected journey, where do you see God's faithfulness the most?
00:46:55.360 --> 00:47:10.079
Or maybe is there something that you want to share where you just have seen him or just or there could just be an overarching theme, but um just the way that he's carried you through this journey with Spina Betheta?
00:47:12.000 --> 00:47:12.559
Wow.
00:47:13.199 --> 00:47:19.039
I don't how do you really sum up 16 years?
00:47:19.199 --> 00:47:25.039
I don't I don't know because there's just what have you learned about his character, I guess.
00:47:25.360 --> 00:47:26.320
Maybe yeah.
00:47:26.639 --> 00:47:37.280
So I think in Romans, Romans 8 28, where it tells us, for we know that um he causes all things to work together for good.
00:47:37.760 --> 00:47:56.800
I think that's kind of been the overarching message uh for me to learn is that he causes all things, even the hard things, even the messy things, the beautiful things, the teaching moments and all of those things.
00:47:56.960 --> 00:48:26.079
He he's caused all of it to work together and it for good, and that good is to bring him glory because so many of the things that we've experienced have been there's some things that we can help, you know, we can use our brains, we can inform ourselves, we can make choices, but um, some of it has just been straight up God has just provided above and beyond us and has worked in those situations.
00:48:26.159 --> 00:48:28.239
And, you know, he didn't need us at all.
00:48:28.559 --> 00:48:32.400
We've just been the grateful recipients of his grace.
00:48:32.719 --> 00:48:44.880
And then I always think about in Proverbs, I think it's Proverbs 16, 9, where he talks about in his heart a man makes his plans, but the Lord orders his steps.
00:48:45.119 --> 00:48:54.559
And so almost 30-year-old Mandy, who was about to have Madison, had her whole life mapped out and had her steps ordered.
00:48:54.880 --> 00:49:04.800
And God just completely diverted my path into this journey of special needs that I did not need or want or ask for.
00:49:05.199 --> 00:49:14.320
Of course, none of us would, but he has just been so good that on that path that he has worked all things out for good.
00:49:14.480 --> 00:49:22.960
And it even says in Romans later in that chapter that we overwhelmingly conquer in all of those things.
00:49:23.119 --> 00:49:32.400
And so even the things that have been hard, that have been so tough, that have been devastating, we have still gained victory over those.
00:49:32.639 --> 00:49:38.880
And ultimately the victory that Madison accepted Jesus as her Lord and Savior when she was 13.
00:49:39.119 --> 00:49:48.559
And she has the promise that one day Spina befida will not be a part of her reality and she will be whole and she'll be healed.
00:49:48.800 --> 00:49:54.079
And she's gonna get the victory over that through through him and through his plans.
00:49:54.320 --> 00:50:02.079
And I ask myself sometimes, like, would I have known these things about the Lord had he not put me on this path?
00:50:02.320 --> 00:50:30.079
And I know God would would make himself known and would receive the glory in anything that we set our attention on him, but I just don't know that I would have learned it as personally, as intimately as I have, had I not been walking this path that I did not choose for myself, but that God has just been ever present in the whole time throughout her whole life.
00:50:30.960 --> 00:50:31.280
Yeah.
00:50:32.000 --> 00:50:36.880
And on that word, we're going to wrap up because there's really not much more to say.
00:50:36.960 --> 00:50:39.440
So thank you, Mandy, for being a guest.
00:50:39.519 --> 00:50:41.199
This was a wonderful conversation.
00:50:41.360 --> 00:50:45.280
We could probably talk for three hours, um, which I love.
00:50:45.599 --> 00:50:48.480
And um, yeah, I feel the same way.
00:50:48.639 --> 00:50:50.400
So God is faithful.
00:50:50.719 --> 00:50:52.800
Um, we are more than conquerors through Him.
00:50:52.960 --> 00:50:54.000
So thank you.
00:50:54.159 --> 00:50:56.320
And thank you so much for having me, Carrie.
00:50:58.159 --> 00:51:05.360
If you have enjoyed this podcast, would you do Carrie a favor and hit the subscribe button to where you listen to podcasts?
00:51:05.599 --> 00:51:07.440
Also, leave a review.
00:51:07.760 --> 00:51:11.199
This helps the podcast to become more visible to others.
00:51:11.440 --> 00:51:22.000
If you would like to share your story on the podcast, visit Carrie's website, carriemholt.com backslash podcast, and fill out the form.
00:51:22.239 --> 00:51:30.400
You can find Carrie online on Facebook and Instagram, and on her Substack page at CM Holt.
00:51:31.119 --> 00:51:35.199
Thank you for joining us today on this unexpected life podcast.
00:51:35.519 --> 00:51:40.079
Real stories, real hope in this unexpected journey.
00:00:00.320 --> 00:00:02.399
Welcome to this unexpected life.
00:00:02.799 --> 00:00:06.959
Would I have known these things about the Lord had He not put me on this path?
00:00:07.200 --> 00:00:23.600
I just don't know that I would have learned it as personally, as intimately as I have had I not been walking this path that I did not choose for myself, but that God has just been ever-present in the whole time.
00:00:24.399 --> 00:00:31.359
A podcast for parents navigating the challenges of raising a child with disabilities or special needs.
00:00:31.600 --> 00:00:42.240
Here we share stories of hope, resilience, and messy faith to help you embrace your journey, work through grief, and thrive in your role.
00:00:42.560 --> 00:00:50.799
Whether you're just starting out or seeking encouragement to keep going, this is a space where your story matters.
00:00:51.039 --> 00:00:59.280
Join Carrie, your storytelling companion, as we explore the hope and healing found in Jesus Christ.
00:00:59.600 --> 00:01:01.520
One story at a time.
00:01:01.920 --> 00:01:05.599
Hello and welcome back to the episode this month.
00:01:05.760 --> 00:01:06.719
It's October.
00:01:06.879 --> 00:01:11.280
This is episode 61, and it's Spina bifida awareness month.
00:01:11.680 --> 00:01:20.719
Spina bifida is my son's main diagnosis along with hydrocephalus, and this month I just wanted to highlight some stories around this specific diagnosis.
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Spina bifida or myelomining literally means split or open spine, and it's a neural tube defect that occurs before mom, even though she's pregnant.
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Usually there's three different forms of spina bifida, but one of the most severe forms, the myelominingesal, causes an open hole in the back, damage to nerves, and depending on the location of the spine, it will cause mobility issues, bowel and bladder function issues, and is often prenatally diagnosed through scans around 20 weeks.
00:01:49.920 --> 00:01:57.760
With that being said, each person with spina bifida is a snowflake, meaning no two kids are alike, which I actually think is with every diagnosis.
00:01:57.920 --> 00:02:02.799
All of our kids are very unique and have different variations within their diagnosis.
00:02:02.959 --> 00:02:05.920
So today, my guest is Mandy Rawls.
00:02:06.079 --> 00:02:12.000
She is wife to Dustin for 22 years and mom to Madison, who's 16, and Dylan, who's 12.
00:02:12.240 --> 00:02:17.199
Professionally, Mandy is in her 21st year of teaching family and consumer sciences.
00:02:17.280 --> 00:02:25.439
And outside of teaching, she is an active member of their church in Cookville, Tennessee, where she serves as the women's ministry leader and sings in the choir.
00:02:25.680 --> 00:02:30.639
In her free time, she enjoys shopping, crafting, decorating, and all things Christmas.
00:02:30.879 --> 00:02:42.479
Being mom to Madison, who was born with Spina bifida is what has shaped Mandy's testimony, and it's her story of God's faithfulness, how he alone deserves the glory for all he's done in the life of her special needs family.
00:02:42.719 --> 00:02:47.759
So today, in my conversation with Mandy, she and I walk through her prenatal diagnosis story.
00:02:47.919 --> 00:02:53.520
We talk a little bit about mom guilt and what it looks like to grieve the milestones when your kids don't meet them.
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We also discuss how to walk through grief and how finding a church is a survival strategy for special needs families.
00:03:00.240 --> 00:03:03.759
So enjoy my conversation today with Mandy Rawls.
00:03:05.360 --> 00:03:09.759
Well, hello, and welcome to this Unexpected Life Podcast.
00:03:09.840 --> 00:03:12.240
Mandy Rawls, thank you so much for being here.
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Thank you for having me, Carrie.
00:03:14.800 --> 00:03:16.319
So exciting to see you.
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Could you start by telling the guests a little bit about who you are, where you're from, your family?
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Sure.
00:03:22.240 --> 00:03:29.520
So I live in Tennessee in a little town called Cookville, which is nestled between Nashville and Knoxville.
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A lot of people aren't quite sure where Cookville is, home of Tennessee Tech, and I am a high school teacher.
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I teach family and consumer sciences, which that's just the new name for HomeC.
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We don't call it Home Eck anymore.
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Been married for almost 22 years, and no, it'll be 23 years, Carrie.
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Yikes.
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I hope my husband doesn't listen to this intro.
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Um, it'll be 23 years on our next anniversary, and we have two kiddos, Madison, who turned 16 this summer, and Dylan, who is 12.
00:04:02.960 --> 00:04:05.840
And Madison is our kiddo with special needs.
00:04:05.919 --> 00:04:07.439
She was born with Spina bifida.
00:04:08.240 --> 00:04:15.199
Yeah, and that's kind of what we're um gonna talk about today because October is Spino bifida awareness month.
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And uh through the years of doing a podcast, I haven't really zeroed in on Spino bifida, even though Toby has it and obviously Madison has it.
00:04:23.519 --> 00:04:33.360
Um, but I wanted to highlight some stories this month because I do think it's a unique um diagnosis, and each kid is very, very different within that diagnosis.
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That's one thing I've learned about every diagnosis, I think.
00:04:36.160 --> 00:04:36.800
Absolutely.
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Everyone is a is a snowflake, just their own unique version um of autism or spina bifida or whatever it might be.
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Um but spina bifida is one of the most common permanent disabling birth defects, according to the Spina Bida Association.
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And a lot of moms, their stories are similar.
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Um, but take us back to when you received that diagnosis.
00:05:01.839 --> 00:05:03.360
It was prenatal, correct?
00:05:03.519 --> 00:05:06.160
And just what did that mean in that moment?
00:05:06.319 --> 00:05:09.279
What did the diagnosis mean to you and your family?
00:05:10.240 --> 00:05:19.839
Well, I think part of what made our diagnosis so difficult was I had miscarried in the pregnancy prior to Madison.
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And so that was devastating in and of itself.
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And we made it to the anatomy scan for what would we would find out would be Madison, and there was just already so much anxiety about pregnancy at that point because we had lost a baby.
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And I just knew in my ultrasound to find out her gender that something wasn't quite right because the tech was just taking forever.
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And she seemed to be taking repeated measurements of the baby's head and looking at the spine, and I was so excited to be in that moment, and our baby had a heartbeat, but I just I knew something was not quite right.
00:06:02.720 --> 00:06:14.720
And so my OB at that time was a very jovial person and just always came through the door with joy on her face and excitement in her voice.
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And when she opened the door, I I knew because that is not how she responded when she came in.
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And so she used the words neural tube defect, which I did know what that was.
00:06:26.639 --> 00:06:37.839
Um, but I just could not believe what we were hearing because here I was just trying to carry my baby to term and not have any complications and and the baby just be okay.
00:06:37.920 --> 00:06:51.600
And so for the doctor to say things were not okay, but at the same time, she wasn't 100% sure it was a neural tube defect because the baby was in a wrong position, and that's why they were taking so many scans.
00:06:51.839 --> 00:07:02.959
So then that led to um seeing a high-risk specialist here in town to try and get even better, you know, angles, measurements, and that one was even worse than the first one.
00:07:03.040 --> 00:07:06.800
And we still didn't have a confirmed diagnosis of spina bifida.
00:07:07.040 --> 00:07:12.720
They actually thought it possibly was trisomy 13 or 18, but no conclusive evidence.
00:07:12.879 --> 00:07:18.800
And so we got sent to a second high-risk specialist that did confirm spina bifida.
00:07:18.959 --> 00:07:28.800
And that was that was probably a month's time span of just pure agony, of not truly knowing what was going on, but knowing something was not quite right.
00:07:28.959 --> 00:07:31.120
So it was devastating for us.
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Yeah, I can't imagine because mine was like boom boom in the same day, and then to wait a whole month for that.
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I mean, could you take us back to that?
00:07:41.120 --> 00:07:44.639
Like, what did you do through all that uncertainty?
00:07:45.040 --> 00:07:56.160
Well, I after the appointment where they thought it was potentially trisomy 13 or 18, I hyperventilated on the way home driving my car.
00:07:56.480 --> 00:08:00.639
And uh by the time I got home, it was full-blown panic attack.
00:08:00.720 --> 00:08:06.000
And I had never experienced one of those in my life, so I didn't even know what my body was doing.
00:08:06.160 --> 00:08:09.360
And my husband was like, You are having a panic attack.
00:08:09.519 --> 00:08:16.240
And so he had to sit with me in those, those devastating moments and just let me have it and try and calm me down.
00:08:16.399 --> 00:08:28.399
And I had a lot of similar moments after that in that time of just feeling just gut punched because this wasn't supposed to happen, according to me.
00:08:28.560 --> 00:08:31.680
I was supposed to have a typical healthy pregnancy.
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I'd already lost a baby, and now I'm losing what I thought was going to be a typical pregnancy and you know, development of my child.
00:08:40.320 --> 00:09:02.879
And so I can even look back on pictures, so many pictures of my time pregnant with Madison, where my eyes were were uh puffy and red because I had been crying and I just kind of lived in that state of grief, just overwhelming grief, especially in those first few weeks where we were waiting to get an official diagnosis.
00:09:03.120 --> 00:09:12.559
And the physician who did confirm spine bifida um was really telling us, like, you know, I can't really tell you anything about your baby's quality of life.
00:09:12.879 --> 00:09:17.519
I don't know what her life will be like, but she's probably not gonna do this, she's probably not gonna do that.
00:09:17.759 --> 00:09:24.960
And I just wish I could go back to that physician and be like, hey, look, you don't tell pregnant moms things like that.
00:09:25.039 --> 00:09:26.720
Those are not the words you use.
00:09:27.039 --> 00:09:34.960
But because of he was painting such a bleak picture, I just I could not find any joy in those days about being pregnant.
00:09:35.039 --> 00:09:37.200
I there was just no joy for me to find.
00:09:37.360 --> 00:09:47.919
I'm a little ashamed at that because I do trust the Lord and in all of his plans and purposes for my life, but it was it was just devastating, truly.
00:09:48.559 --> 00:09:48.879
Yeah.
00:09:49.679 --> 00:09:51.759
Thank you for just having the courage to say that.
00:09:51.919 --> 00:09:56.960
And you know, I just and I want to encourage you, our faith in Jesus doesn't mean we always have joy.
00:09:57.120 --> 00:09:59.519
And I think I had a similar experience.
00:10:00.480 --> 00:10:03.679
At one point in my pregnancy, I thought it was miscarrying.
00:10:03.919 --> 00:10:09.600
And you know, I was up in the middle of the night, I hadn't felt the baby move in just hours a full day.
00:10:09.679 --> 00:10:14.159
And you know, I'm Googling like 24 weeks, like when do you bury the baby?
00:10:14.320 --> 00:10:27.279
Like, just all of these things, and it does take away so much of the joy that you know, you no longer have a due date, you have a surgery date, you know, like just all of those things that just pull the rug out from under you.
00:10:28.000 --> 00:10:38.720
So, one of the things that you shared with me is how there were some ways that you can look back and see that God had prepared you beforehand.
00:10:38.879 --> 00:10:50.399
And my jaw hit the floor because I have a I have similar stories too of I can see little moments of God preparing us, even the day of the diagnosis.
00:10:50.799 --> 00:10:55.279
I looked at my husband and said, I would tell you to go to work, but I think you need to be here.
00:10:55.600 --> 00:11:04.399
And I even said to him, I don't think anything's wrong, but I just feel like you need to be here because I had an ultrasound and then we were waiting to see the doctor and similar thing.
00:11:04.480 --> 00:11:09.840
It was taking so much time, I think, because they were trying to read the scans and figure out how to tell us.
00:11:10.159 --> 00:11:16.399
So, what were some of those ways that God prepared you and how has that framed your view of him?
00:11:17.600 --> 00:11:33.039
Well, when I was in high school, through some experiences and connections with some extended family, had become really, I guess, intrigued by birth defects and research surrounding birth defects.
00:11:33.200 --> 00:11:45.600
I had wound up being kind of close to a little girl who was born with fetal alcohol syndrome and really was just kind of becoming passionate about learning about it and what about birth defects can be prevented?
00:11:45.759 --> 00:11:47.919
Are there things that we can or can't do?
00:11:48.080 --> 00:11:57.759
And so, my senior year of high school, I was in a class called service learning, and we had to pick a community agency to go serve at two to three times a week.
00:11:57.840 --> 00:12:04.159
We would get credit for it, but then we were giving of our time and we were going to create projects about what we learned.
00:12:04.320 --> 00:12:16.639
And so, because I was getting so passionate about this, you know, quest to understand more about birth defects, I asked to be placed at the March of Dimes, which I'll be honest, I don't know if the March of Dimes still exists.
00:12:16.720 --> 00:12:19.360
I feel like I don't hear anything about them anymore.
00:12:19.519 --> 00:12:23.039
But we had a very active chapter in Chattanooga where I grew up.
00:12:23.200 --> 00:12:46.879
So I very easily connected with them and got connected to work in their parent education department, where I would pull all of these resources about specific birth defects and collate them in a folder, kind of package it up all nice and neat so that if a parent came and needed more information, had just gotten a diagnosis, then we could hand them these packets.
00:12:47.120 --> 00:12:52.960
And so when I sat down to prepare my first round of packets, it was about spina bifida.
00:12:53.120 --> 00:13:07.840
And so I just had at my fingertips all of this research, um, all of these documents, all of this medical information about what a neural tube defect is, what kinds there are, what do we typically see in terms of the symptoms for a child.
00:13:07.919 --> 00:13:12.000
And so I was gaining all of the head knowledge about spina bifida.
00:13:12.159 --> 00:13:24.320
And I had no clue, no clue that I guess roughly about 10, 12 years from that date is when I would be getting a spina bifida diagnosis for my daughter.
00:13:24.559 --> 00:13:45.519
And so, in that moment, truly, when the doctor opened the door and she came in with that long look on her face and said, neural tube defect, I just like took an instant jump back in time to sitting at that desk at the March of Dimes where I was looking at all this research and I was like, I know what this is.
00:13:45.840 --> 00:13:55.279
And so God was gracious in that time to kind of soften the blow because I didn't have to do the research.
00:13:55.440 --> 00:14:03.200
I didn't have to go to the internet, which is a very scary place when you're trying to be a keyboard doctor.
00:14:03.440 --> 00:14:06.639
And I didn't have to do any of that because I knew exactly what it was.
00:14:06.879 --> 00:14:08.159
My husband did not.
00:14:08.320 --> 00:14:25.360
And so there were things that he kind of had to gain some understanding about, but I can just look back on that and see that that was just a small way that God had prepared my heart by preparing my mind to understand what was happening in my body with my baby.
00:14:25.519 --> 00:14:32.639
And so I think it just revealed so much of his character about how he has plans for us.
00:14:32.720 --> 00:14:35.759
Um, and he is working in ways that we cannot see.
00:14:35.919 --> 00:14:53.919
And again, I I never would have guessed that as a 17-year-old in high school, that he would use something as small and seemingly insignificant as stuff and packets to be with me and minister to me as an adult, getting that diagnosis for my child.
00:14:54.320 --> 00:14:55.759
Yeah, absolutely.
00:14:56.240 --> 00:14:57.200
Absolutely.
00:14:57.440 --> 00:15:03.039
Um, I love it made me chuckle when you said the keyboard doctor, because we we all do that, don't we?
00:15:03.360 --> 00:15:12.960
Oh, I in that time, I will I will tell you, in that time where we were so back and forth and we weren't sure could it be, it might not, I I did do that.
00:15:13.120 --> 00:15:16.399
And I'll I learned very quickly that was an unhealthy habit.
00:15:16.559 --> 00:15:23.200
And so I have even shared with moms who have gotten recent diagnoses to please, please stay away from the internet.
00:15:23.519 --> 00:15:26.320
And when you have your questions, ask your physician.
00:15:26.399 --> 00:15:31.679
Don't even ask a mom who has a child with spina bifida because it's probably not gonna be the same.
00:15:31.919 --> 00:15:42.960
I know a lot of those tears that I had in those early days came from me trying to investigate and learn some more because there was just so much uncertainty from her doctors that we had at the time.
00:15:43.120 --> 00:15:45.759
So yeah, that's just that's not a healthy practice.
00:15:46.320 --> 00:15:47.440
Yeah, absolutely.
00:15:48.080 --> 00:15:48.799
Can be hard.
00:15:49.120 --> 00:15:51.440
So they set you up for the birth of this baby.
00:15:51.919 --> 00:15:56.000
But the most common form of spina bifida is the one that is the open hole in the back.
00:15:56.320 --> 00:15:57.840
There's various forms.
00:15:58.480 --> 00:16:04.639
So there's damage to the spine, there's damage to the nerves, you have to have surgery close to birth to close that open hole.
00:16:04.960 --> 00:16:11.840
And a lot of times kids need a shunt unless you have the prenatal surgery, which is becoming more and more common.
00:16:12.000 --> 00:16:15.279
Um, I think our kids were a little too early for that.
00:16:15.440 --> 00:16:17.440
I know it was just in the research stages.
00:16:17.759 --> 00:16:21.519
When I was pregnant with Toby, he's gonna be 20 in December.
00:16:22.000 --> 00:16:26.720
But I guess walk us through those first few years of her life.
00:16:26.799 --> 00:16:28.480
What did that look like for you?
00:16:29.600 --> 00:16:35.919
So she had her spinal closure surgery the very next morning after she was born.
00:16:36.240 --> 00:16:46.480
And up to that point, we had been watching to see prenatally if there was any dilation in the ventricles that might indicate she would need a shunt.
00:16:46.559 --> 00:16:49.840
And there had been concern, and then the concern dwindled.
00:16:49.919 --> 00:16:51.919
So I thought, my baby is good.
00:16:52.080 --> 00:16:54.639
Like my baby does not need a shunt.
00:16:54.879 --> 00:16:57.120
And so we did the closure surgery.
00:16:57.279 --> 00:17:00.080
We were in the hospital for I think it was eight days.
00:17:00.159 --> 00:17:16.960
She was in the NICU for eight days, came home, and on 4th of July weekend, of course, on holiday weekend when none of the surgeons were working, she had a medical emergency because of the spinal fluid that was compressing her ventricles.
00:17:17.200 --> 00:17:27.200
And we wound up going into the ER to get admitted over the weekend, just waiting for the surgeons to come on that Monday after the holiday.
00:17:27.359 --> 00:17:35.839
And sure enough, her little ventricles were so dilated and they believed they could see some scarring on the back of the eyes because of it.
00:17:36.079 --> 00:17:42.799
And I just felt so awful because I can look back on pictures of her in those first four weeks.
00:17:42.960 --> 00:17:49.599
And I thought she just had that little shrivelly newborn look about her because that's how newborns are supposed to look.
00:17:49.759 --> 00:17:58.240
And having never had a baby, didn't have any frame of reference, but her little eyes were so sunken and she had really dark circles.
00:17:58.559 --> 00:18:06.079
And her being lethargic, I also thought was sleepy baby, just fed the baby, didn't know what to expect.
00:18:06.160 --> 00:18:13.599
And so I carried a lot of mom guilt right after that surgery because what did I miss where I could have gotten her there sooner?
00:18:13.680 --> 00:18:15.920
But I just truly had no frame of reference.
00:18:16.079 --> 00:18:24.480
And so when she was four weeks old, she had the brain surgery to get the VP shunt, and that was that was pretty brutal.
00:18:24.720 --> 00:18:28.880
They gave her nothing but Tylenol with codeine to recover.
00:18:29.039 --> 00:18:38.079
And so she just screamed almost like somebody was pressing a button every two to three minutes all night long while we were admitted in the hospital.
00:18:38.400 --> 00:18:42.319
And she looked possessed, like her eyes were black.
00:18:42.480 --> 00:18:46.319
Um, I think she was just in so much pain, and that is all they would give her.
00:18:46.400 --> 00:18:51.119
And so that was a really rude awakening into parenthood.
00:18:51.759 --> 00:18:54.640
But then she became a whole new baby after that.
00:18:54.799 --> 00:19:00.160
And that's where we really saw the power of getting that fluid off of her brain.
00:19:00.480 --> 00:19:02.640
And she started to fill out.
00:19:02.799 --> 00:19:06.160
She seemed more alert and kind of tracking with us.
00:19:06.240 --> 00:19:09.279
And so I'm so thankful that we were able to remedy that.
00:19:09.359 --> 00:19:13.519
But I was just so hopeful that that was not going to be her reality.
00:19:13.839 --> 00:19:20.240
And so all of the research tells you all the things that you could typically expect with Milo Meningia seal.
00:19:20.319 --> 00:19:22.319
But I was like, nope, not my baby.
00:19:22.400 --> 00:19:23.359
She's doing good.
00:19:23.519 --> 00:19:25.519
We're not seeing those signs.
00:19:25.759 --> 00:19:28.640
And then slowly but surely they started to pile up.
00:19:28.880 --> 00:19:40.480
And her biggest issues that we had once we got over that hurdle with the shunt was just the bladder dysfunction, just terrible bladder dysfunction and horrible reflux into the kidneys.
00:19:40.640 --> 00:19:47.839
And so pretty early on, we identified that she had kidney disease and there was scarring of both of the kidneys.
00:19:48.000 --> 00:19:55.359
And so her first surgery post-birth was when she was two to get a vesicostomy.
00:19:55.599 --> 00:20:00.960
And that was a nightmare just to allow urine to freely drain from her body.
00:20:01.039 --> 00:20:07.920
And then when that failed, it led to a bladder augment when she was six with getting a chake tube.
00:20:08.079 --> 00:20:10.480
And then that ultimately failed.
00:20:10.559 --> 00:20:14.079
And so when she was 13, she got ostomies.
00:20:14.160 --> 00:20:24.240
And so I know I'm like fast forwarding, but just to just to paint the picture of, I was so hopeful that we could sidestep some of those symptoms.
00:20:24.400 --> 00:20:33.599
And it almost seemed to be like the dominoes were falling right in the path of every single complication that we could have with spinobifidus, she seemed to be having it.
00:20:33.759 --> 00:20:38.240
And that was nothing to mention of the mobility issues we were also noticing.
00:20:38.480 --> 00:20:40.160
But I wasn't as concerned.
00:20:40.240 --> 00:20:42.000
Like I just needed her to be healthy.
00:20:42.160 --> 00:20:46.160
And so the walking will work on that, but is she healthy?
00:20:46.240 --> 00:20:49.519
And at one point she was diagnosed as failure to thrive.
00:20:49.599 --> 00:20:54.640
And that was just so hard to see her just really not, she wasn't thriving.
00:20:54.720 --> 00:20:56.400
I mean, that's just simply put, you know.
00:20:56.480 --> 00:21:03.119
And so that was that was hard when she was in the two to three-year-old range and and diagnosed as that.
00:21:03.279 --> 00:21:12.720
So those were those were hard years trying to figure it all out and then find the solutions for all of these medical complications that were piling up.
00:21:12.799 --> 00:21:19.440
And I I know you know, I mean, you've you had similar plus some, so you know exactly what I'm talking about.
00:21:20.000 --> 00:21:20.400
Yeah.
00:21:20.720 --> 00:21:33.759
I want to go back to the one thing you mentioned about looking back at pictures and feeling that mom guilt because I think a lot of moms listening can relate to that guilty feeling of like, am I missing something?
00:21:34.000 --> 00:21:48.319
And I think we put a lot of pressure on ourselves to keep our kids alive, to care for them, which it is, you know, obviously our role as parents of kids with disabilities and special needs.
00:21:49.519 --> 00:21:56.720
But can you look back and say, Oh, there was this one thing that helped me release the guild, or was it just time?
00:21:57.039 --> 00:22:07.519
Because I'm just thinking about that mom who's just really, really Stuck in I miss that and it's my fault that we ended up here and my child's had lasting effects from this.
00:22:07.839 --> 00:22:16.400
How do we let that go and let the Lord be sufficient for those moments that we can't I mean we're human, we can't catch everything.
00:22:16.960 --> 00:22:17.440
Sure.
00:22:18.240 --> 00:22:37.839
Gosh, that's hard because I think, I mean, God just wired moms differently, anyways, for us to be so deeply feeling and to be so concerned with care and trying to be the best that we can be for these these babies that we love so much.
00:22:38.079 --> 00:22:40.400
I I don't know that I have a great answer.
00:22:40.559 --> 00:23:02.559
I do think time, and I shared with someone once that just trying to always take whatever it was, whatever the problem of the day was in terms of gonna need surgery, gonna need this therapy, gonna need to pursue this route, to take that before the Lord and just bathe it in prayer and ask for peace.
00:23:02.720 --> 00:23:05.680
Beg him to give us peace about that.
00:23:06.000 --> 00:23:13.519
And he has always been able to confirm in me through the Holy Spirit, you know, this is what you need to be doing.
00:23:13.680 --> 00:23:22.720
There was there was only one surgery that Madison has had where I really struggled and it took a while for that peace to come.
00:23:22.960 --> 00:23:28.960
And that was what I felt like was her most life-changing surgery to get to ostomies when she was 13.
00:23:29.200 --> 00:23:32.720
But just to beg him for that peace and he will provide it.
00:23:32.799 --> 00:23:34.799
And sometimes he does that himself.
00:23:34.960 --> 00:23:36.640
Sometimes he uses other people.
00:23:36.880 --> 00:23:47.039
Sometimes he confirms what we should be doing through information that a surgeon can provide or through the comfort that a doctor can provide.
00:23:47.119 --> 00:23:58.400
We have been so blessed with world-class physicians that have been able to answer questions and give us peace in these decisions and to really empathize and be like, look, I get it.
00:23:58.559 --> 00:24:00.799
You are making tough decisions here.
00:24:00.960 --> 00:24:03.680
And so we we want you to have as much information.
00:24:03.839 --> 00:24:05.440
We want you to ask the hard questions.
00:24:05.680 --> 00:24:10.240
And I think that's just been really humane of them to do that, very compassionate.
00:24:10.400 --> 00:24:13.200
And so I think the Lord has worked through them as well.
00:24:13.440 --> 00:24:21.599
But I think the time and bathing everything in prayer is really the only way I feel like I've been able to kind of get past those things.
00:24:21.759 --> 00:24:23.200
But like you said, we're human.
00:24:23.359 --> 00:24:27.599
And so it it's it's bound to happen.
00:24:27.920 --> 00:24:28.240
Right.
00:24:28.400 --> 00:24:29.599
It's so it's so good.
00:24:29.759 --> 00:24:34.720
And to feel like you have the space to they're the doctor, ask them the questions.
00:24:34.880 --> 00:24:38.480
I know through the years they hate this question, but this was your child.
00:24:38.640 --> 00:24:39.519
What would you do?
00:24:40.160 --> 00:24:43.680
Yeah you know, they always look at me like, really, you're gonna ask me that question?
00:24:43.839 --> 00:24:44.480
You're gonna go there?
00:24:44.559 --> 00:24:47.359
I'm like, no, I am gonna go there because we're just stuck.
00:24:47.440 --> 00:24:49.920
We're not really sure what to do in this moment.
00:24:50.319 --> 00:24:59.759
I think one of the hardest parts of the journey with Spina bifida is all those milestones that our kids either don't reach or they reach late.
00:25:00.079 --> 00:25:04.400
We're grieving those moving into adulthood.
00:25:04.640 --> 00:25:08.000
Their adulthood looks very different a lot of times.
00:25:08.160 --> 00:25:17.200
I know I'm I'm dealing with that right now and wrestling with am I limiting my child with what I think their future can be?
00:25:17.359 --> 00:25:20.640
I mean, am I not giving them enough autonomy over certain things?
00:25:21.200 --> 00:25:38.799
So maybe how have you learned to just kind of navigate all of those things without just constant, I guess, comparison and jealousy and and anger even that your child isn't isn't like a neurotypical reaching those milestones neurotypically.
00:25:40.480 --> 00:25:53.759
I think I think part of navigating it is it's a very, I guess, basic uh notion, but I cannot control those things.
00:25:54.000 --> 00:25:58.400
And it has taken me Madison's whole life to learn that.
00:25:58.480 --> 00:26:05.839
And that was the one thing I feel like God needed to teach me that I had not learned before her, that I'm just not in control.
00:26:06.079 --> 00:26:18.799
And so if I'm not in control of when she's gonna reach those milestones, if she's gonna reach those milestones, then I need to be focusing my energy on something else that I can.
00:26:19.039 --> 00:26:23.759
I can focus on how are we going to celebrate the ones that you do make.
00:26:24.079 --> 00:26:37.680
We had a down with diapers party when she finally was able to stop wearing diapers because we were gonna start being able to control her bladder and her bowels with the chate tube and the stoma to cath with.
00:26:37.759 --> 00:26:40.720
And so that was that was a big deal for us, and we celebrated that.
00:26:40.799 --> 00:26:50.559
And I'm sure there's not a lot of six-year-olds that would be celebrating getting out of diapers because they are out of diapers already and their families, that's not a big deal.
00:26:50.720 --> 00:26:52.640
But for us, it was huge.
00:26:52.880 --> 00:27:02.799
And so trying to focus on what I can really manage for her instead of those things that are beyond my control.
00:27:03.359 --> 00:27:16.319
When things kind of started taking the shift in her care towards these ostomies that she was going to be getting, and she became a wheelchair user, and that was new to us.
00:27:16.480 --> 00:27:27.200
It just really kind of started to feel like I'm not sure that living independently is a reality for Madison in the in the near future.
00:27:27.359 --> 00:27:29.920
And I don't think that's me trying to be cynical.
00:27:30.319 --> 00:27:40.480
I just don't see the proof of it in how she's managing versus what we're managing and even just some of the physical limitations that she has.
00:27:40.640 --> 00:27:46.960
And so I really just was struggling with, I don't, I don't know that that is ever going to happen for her.
00:27:47.119 --> 00:28:00.160
And so, in an effort to try and, you know, maybe find the the positives and and maybe the flip side of that, we wanted to give her the idea that she had like an apartment.
00:28:00.319 --> 00:28:08.319
And so we painted her bedroom door and put numbers on it and put a wreath and a mailbox on it.
00:28:08.720 --> 00:28:12.559
And um we painted it pink to match her bedroom.
00:28:12.880 --> 00:28:17.279
And it looks like you're walking up to an apartment when you come to her bedroom door.
00:28:17.599 --> 00:28:31.359
And I just I wanted it to feel like this is your space, you belong here, even if this is a space that you're gonna live in for a long time, even even if it's not outside of our home, away from us.
00:28:31.519 --> 00:28:36.799
And so just trying to maybe find the positives there.
00:28:36.960 --> 00:28:48.160
And our mutual friend Becky Davidson with Rising Above, she calls it like the flip side, finding the flip side of my daughter is not driving, even though she just turned 16.
00:28:48.319 --> 00:28:54.880
Well, I don't have to pay insurance premiums to add a teen driver to my insurance bill, you know?
00:28:55.119 --> 00:28:59.200
And I don't have to worry about her running the roads and getting into accidents.
00:28:59.440 --> 00:29:07.119
And so just trying to reframe those things, I think, has been helpful for me in trying to cope with those missed milestones.
00:29:07.440 --> 00:29:09.119
Yeah, absolutely.
00:29:09.759 --> 00:29:16.160
Are there times when you have to help her reframe some of those things?
00:29:16.400 --> 00:29:18.960
I'm in this moment right now with our son.
00:29:19.119 --> 00:29:36.000
How do I help him walk through his own grieving and the reality that, you know, he's watching he has two older brothers and a younger sister, so he's watching his oldest brother get married, and then his younger sister, three years younger, got her driver's license, she's driving, he's not.
00:29:36.559 --> 00:29:46.079
It can just be this tricky balance of all of a sudden he's looking at the world going, wait a second, I'm not doing that and that and that.
00:29:46.400 --> 00:29:47.519
Has she experienced that?
00:29:47.680 --> 00:29:49.279
And how are you helping her?
00:29:49.359 --> 00:29:51.920
How are you and your husband helping her navigate that?
00:29:52.880 --> 00:30:03.119
Yeah, she she has when we had that surgery when she got the ostomies, that's that's been kind of a real dividing line in her life.
00:30:03.279 --> 00:30:09.200
Before ostomies and after ostomies, is is kind of how we have viewed things.
00:30:09.359 --> 00:30:16.400
And when she came home from hospital with that, I mean, she had just had major abdominal surgery.
00:30:16.720 --> 00:30:19.359
And um, she was in a lot of pain.
00:30:19.680 --> 00:30:24.000
And it was the first shower that we gave her.
00:30:24.319 --> 00:30:27.359
It was, I mean, it was a disaster.
00:30:27.599 --> 00:30:30.720
It probably took us 45 minutes.
00:30:31.039 --> 00:30:34.559
We were carrying her in there, both of us.
00:30:35.119 --> 00:30:38.960
Oh my goodness, I don't imagine that it could have gone any worse than it did.
00:30:39.119 --> 00:30:42.160
And by the time we were done, she was in tears.
00:30:42.319 --> 00:30:43.759
I was in tears.
00:30:44.160 --> 00:30:50.480
And so I got her back to the bed to dry her off, and everything was peeling off from the shower.
00:30:50.559 --> 00:30:52.880
So we're gonna have to redress everything.
00:30:53.200 --> 00:31:02.720
And she just broke down in her tears, and she was like, How will I ever live on my own if this is what it's like to take a shower?
00:31:02.960 --> 00:31:04.319
And she was 13.
00:31:04.480 --> 00:31:09.359
It just killed me that that's what was going through her mind at that time.
00:31:09.920 --> 00:31:21.119
And the only thing I could do, because I really feel like this is what the Lord has had to press into me, is when he talks about in Matthew about we can't worry about tomorrow.
00:31:21.359 --> 00:31:23.599
You know, look at the birds of the air.
00:31:23.759 --> 00:31:28.640
They don't have to worry about what they're gonna eat or what they're gonna drink or where they're gonna sleep.
00:31:28.720 --> 00:31:33.759
And so if he can care for the birds of the air, how much more does he care for us?
00:31:33.920 --> 00:31:38.720
And that's all I could tell her in that moment is I was like, I don't know, babe.
00:31:38.880 --> 00:31:40.559
I don't have a clue.
00:31:40.799 --> 00:31:45.920
I don't know if there is an answer to that, but we're gonna not worry about that right now.
00:31:46.079 --> 00:31:51.440
We're just gonna focus on today and getting you cleaned up and get this taken care of.
00:31:51.680 --> 00:32:00.640
And I feel like we've had to have that same kind of conversation since then several times of I don't know that we should be thinking that far ahead.
00:32:00.720 --> 00:32:14.960
That I I learned that also very early on of to not try and make a lot of plans in my mind and not try and frame a lot of expectations because I would wind up devastated and feel like a failure, and she would too.
00:32:15.200 --> 00:32:28.880
And so, just in that moment though, after that, just seeing her so broken about it was just trying to encourage her that God has a plan and we don't know it right now, and we're not gonna worry about it for tomorrow.
00:32:29.039 --> 00:32:35.440
Let's just focus on what we can do right now and today, and he will provide, he will make a way in those circumstances.
00:32:35.759 --> 00:32:36.319
Yeah.
00:32:36.640 --> 00:32:37.519
And I love that.
00:32:37.599 --> 00:32:39.440
It's a good reminder for me to hear that too.
00:32:39.519 --> 00:32:41.200
Of don't look too far ahead.
00:32:41.279 --> 00:32:42.960
Like God holds tomorrow.
00:32:43.200 --> 00:32:44.880
Let's just focus on today.
00:32:45.039 --> 00:32:47.279
What is he calling us to do today?
00:32:47.519 --> 00:32:52.640
And then also modeling that for our kids and and total dependence on the Lord.
00:32:52.720 --> 00:32:56.960
And you know, you talked about earlier how we are not in control.
00:32:57.519 --> 00:33:00.720
And um, I think our kids are learning that too.
00:33:00.960 --> 00:33:02.799
Like, we're we're not in control.
00:33:03.039 --> 00:33:05.119
God is, and he's gonna hold us.
00:33:05.599 --> 00:33:13.359
So I want to switch gears a little bit and talk about the community and especially the church community around you.
00:33:13.839 --> 00:33:16.000
How has your church community come around you?
00:33:16.160 --> 00:33:23.599
And how is it one of those strategies of that we need community in order to walk this journey with our kids?
00:33:23.920 --> 00:33:24.480
Yeah.
00:33:24.799 --> 00:33:33.359
So you said it best uh off the mic when you said that having a church community is a survival strategy for special needs families.
00:33:33.519 --> 00:33:35.279
And I could not agree with that more.
00:33:35.519 --> 00:33:37.359
You hit the nail on the head there.
00:33:37.920 --> 00:33:57.359
And I think for us, um, when we moved to Cookville, we were here for I guess it was four years before Madison came along, um, where we were digging in and planting roots at our church and getting involved.
00:33:57.440 --> 00:34:03.519
And it was just Dustin and Mandy, and you know, finding community there with just the two of us.
00:34:03.680 --> 00:34:06.880
And then when we miscarried, they rallied around us.
00:34:06.960 --> 00:34:15.679
And then when we got Madison's diagnosis, truly at that time, there was nobody else in our church body that was walking a similar path.
00:34:15.840 --> 00:34:24.880
And so it it felt as though the church was literally walking that road with us and carrying our burden with us.
00:34:25.119 --> 00:34:32.000
And because we live in Cookville and we have no family here, both of our parents live about an hour and a half from us.
00:34:32.239 --> 00:34:33.840
So they were our family.
00:34:34.000 --> 00:34:36.800
There was no one else but them to lean on.
00:34:37.039 --> 00:34:39.119
And they just did it so beautifully.
00:34:39.199 --> 00:34:59.679
And they have the whole time since I found out I was pregnant with her and it was going to be spina bifida, and I was sobbing at the altar to just this summer when she had another pretty intense surgery and recovery phase, and have been the hands and feet of Jesus for us time and time and time again.
00:34:59.760 --> 00:35:07.199
And I have told some of my closest friends, I was like, I know you've got to be tired of us needing something, but I need you.
00:35:07.440 --> 00:35:15.519
I know that, I know that you say Madison's name, and I know you lift our family's name up in prayer all the time, but I still need you to after all this time.
00:35:15.760 --> 00:35:40.400
And I'm just so thankful that they've never stopped and they've just been doing life right along with us, and they have made us feel as though there is no difference between us and any other family that's in our church body, just because we have to do things differently, or we maybe have to miss a little here or a little there, you know, when there's been hospital stays, but it it just has been, I I don't know where we would be without them.
00:35:40.480 --> 00:35:54.960
And that's not to say our families have not been just amazing and supportive, not would never imply that, but because this church is here where we are and doing life with us, they have just been everything to us.
00:35:55.280 --> 00:35:55.840
Yeah.
00:35:56.159 --> 00:36:02.239
I think one of the things I hear you saying is they've just been willing to walk through life with you.
00:36:02.320 --> 00:36:10.000
You know, I was gonna ask you like, what are some of the ways someone's listening to the podcast and they don't have a child with disabilities?
00:36:10.320 --> 00:36:11.760
What are the ways that they can help?
00:36:11.840 --> 00:36:13.039
But they didn't walk away.
00:36:13.199 --> 00:36:14.639
And I think that's one of the fears.
00:36:14.800 --> 00:36:19.920
I know personally that's a fear that I have sometimes is that this is a lifetime thing, right?
00:36:20.079 --> 00:36:23.199
My friend Jonna Hensley says, forever nesting.
00:36:23.280 --> 00:36:25.440
There's a possibility we're gonna be forever nesting.
00:36:25.519 --> 00:36:30.559
And we have friends who are close to empty nesters, they're traveling, they're doing all these things.
00:36:30.719 --> 00:36:39.920
And I actually looked at my husband the other day and I said, Do you sometimes feel just a little bit wish that we could do that and be in that space?
00:36:40.079 --> 00:36:50.639
And he said, He said, Yeah, it can be really hard because our life looks very different, and our kids might live with us till till we go to glory.
00:36:51.199 --> 00:37:05.440
But I think when people are willing to be there for the long haul, and and also the other thing that you said is courageous enough for you to say, I'm so glad you're here, like I need you.
00:37:06.000 --> 00:37:13.920
A lot of times families aren't willing to be vulnerable and say, I need help and this is what I need, and be specific.
00:37:14.079 --> 00:37:19.440
Is there anything you would add that's been helpful for supporting your family through this journey?
00:37:19.840 --> 00:37:31.840
I think part of the reason why our church family has been so in it with us is Dustin and I are both very outspoken, extroverted people.
00:37:32.480 --> 00:37:36.079
Never met a stranger and we overshare.
00:37:36.159 --> 00:37:39.280
I mean, we we joke about that, is that we overshare.
00:37:40.639 --> 00:37:50.159
But that is how, like you said, just like opening up your circle, you've got to invite people in because it's too much.
00:37:50.400 --> 00:37:54.000
It's just too much to bear alone.
00:37:54.239 --> 00:37:56.159
And we have not held back.
00:37:56.480 --> 00:38:05.360
And our our friends have wanted to be right there and tell us what is the dirty, low-down detail here about what's happening to her body.
00:38:05.599 --> 00:38:08.559
And can we come help do something?
00:38:08.800 --> 00:38:29.760
You know, I would say if you have any listeners that don't have a child living with special needs and they're just wondering how to be a good friend, is to just ask and not let that family off the hook when they say, Oh, no, we're good, we're good, um, because our friends have been persistent.
00:38:30.079 --> 00:38:35.760
And to the point that there have been times where we didn't say anything and they just did it.
00:38:35.840 --> 00:38:37.360
They just, they just acted.
00:38:37.519 --> 00:38:49.360
So, I mean, that was simple things like one time we came home from the hospital and they had planted our flower bed full of flowers so that we had something pretty to look at um while we were inside.
00:38:49.440 --> 00:39:01.199
And they've bought our groceries and they've mowed our grass and they've done a lot of other beautiful, profound things for us that I won't share, but as I'm sure you've experienced too.
00:39:01.360 --> 00:39:07.760
But uh it's because I feel like we've not been afraid to share those things with them.
00:39:08.320 --> 00:39:11.920
And they just kept asking, and they never would take no from us.
00:39:12.079 --> 00:39:12.880
We don't need help.
00:39:13.119 --> 00:39:19.840
Like, for example, this surgery that Madison just had this summer, she was gonna be having it the last two weeks of our school year.
00:39:19.920 --> 00:39:21.519
So I was still teaching.
00:39:21.679 --> 00:39:25.280
It was actually a pretty intense uh time of year for me.
00:39:25.599 --> 00:39:32.880
And she was having this surgery, and I was only gonna get to stay with her in the hospital for two days, and then my husband would be there the rest of the time.
00:39:33.119 --> 00:39:37.119
And one of my friends inquired, she was like, Well, we're gonna do a meal train.
00:39:37.199 --> 00:39:39.920
I was like, No, I was like, I'm fine.
00:39:40.000 --> 00:39:41.199
There's nothing wrong with me.
00:39:41.360 --> 00:39:44.480
There's no reason why I can't cook and provide dinner to my family.
00:39:44.559 --> 00:39:47.760
And they're like, no, we're still doing a meal train.
00:39:47.920 --> 00:39:52.480
And I was very uncomfortable with it, and I really pushed back and fought them on it.
00:39:52.559 --> 00:39:56.239
And they were like, just let us love your family.
00:39:56.480 --> 00:40:05.519
And if I have had that said to me once, I've it's probably been a hundred times, and I've I've had to start letting it sink in, is to just let them love on us.
00:40:05.599 --> 00:40:15.679
And if that's how they know to do and all they know to do, then who am I to deny that the opportunity for them to share God's love with us?
00:40:15.760 --> 00:40:19.760
And so I did, I I didn't want to, but we we set up the meal train.
00:40:19.840 --> 00:40:22.079
And do you know that it was the most amazing thing?
00:40:22.320 --> 00:40:24.079
And it wasn't because I wasn't capable.
00:40:24.239 --> 00:40:26.239
They were like, we just don't want you to worry about it.
00:40:26.320 --> 00:40:31.679
We know that her recovery is intense, and so let us take this off your plate.
00:40:31.920 --> 00:40:40.800
And they did it so well, and they've been doing that her whole life in one season or one trauma-filled moment to another.
00:40:40.960 --> 00:40:42.719
That's that's how they've been the whole time.
00:40:42.880 --> 00:40:43.039
Yeah.
00:40:44.000 --> 00:40:44.719
I love that.
00:40:44.880 --> 00:40:58.960
We go to a family camp every summer where the director says we look most like Jesus when we serve, and when we don't allow other people to serve us, we're not allowing them to look like Jesus and act like him and serve like him.
00:40:59.360 --> 00:41:02.159
And so I think that's really, really important.
00:41:02.719 --> 00:41:03.039
Yeah.
00:41:03.599 --> 00:41:10.320
So as we wrap up, I want to talk a little bit about advocating for your child, which we've had to do medically, right?
00:41:10.480 --> 00:41:14.400
For many years, but particularly within the school system.
00:41:14.960 --> 00:41:23.760
What do you wish every parent of a child with disabilities understood is their role as an advocate and how has that played out in your journey?
00:41:24.079 --> 00:41:32.719
Well, I think it's important that parents know that if you're not advocating, there's a good chance that nobody else is.
00:41:32.960 --> 00:41:36.239
And so you you gotta do it.
00:41:36.480 --> 00:41:54.079
And even if it means that you might temporarily make some enemies or step on some toes, that is your job to fight for the quality of education that your child deserves, just like any other child that's in that school.
00:41:54.320 --> 00:42:01.599
And so I that has been a particularly challenging task for me as a teacher and as a parent.
00:42:01.840 --> 00:42:11.920
And so I can look back on some situations where I felt like I could not fully advocate for her without becoming the villain in my school system.
00:42:12.159 --> 00:42:17.119
And so I had to defer to my husband a lot and be like, I'm gonna need you to fight this battle.
00:42:17.280 --> 00:42:19.360
I'm gonna need you to go toe-to-toe on this one.
00:42:19.519 --> 00:42:28.639
And I'm just gonna have to be a silent observer because the mama bear is wanting to come out and it would not be good for me professionally.
00:42:28.880 --> 00:42:32.239
But a lot of people are not in that situation.
00:42:32.400 --> 00:42:38.000
But I would say that I think it's really important to know what your rights are.
00:42:38.480 --> 00:42:45.920
And every IEP meeting that you go to, you should be asked, do you know what your procedural safeguards are?
00:42:46.159 --> 00:42:49.599
Have you been provided with a copy of your procedural safeguards?
00:42:49.840 --> 00:43:03.199
And if a parent's answer to that is no, then they need to halt, they need to stop, and they need to become aware of what is within their right to ask for so that they're going in as informed as possible.
00:43:03.280 --> 00:43:19.360
Because here's what I see as a teacher on the other side of the table is that these teachers and these case managers are getting called into meetings right as they were, you know, teaching and doing other things, and then they've just pressed pause on those to run into this meeting.
00:43:19.679 --> 00:43:25.760
They're not really, their head's not in it because it's just this is the task of the moment for them to do.
00:43:25.920 --> 00:43:34.639
And so are they really coming into that meeting holding your child's needs and goals in the forefront of their mind?
00:43:34.800 --> 00:43:43.519
And the answer is probably no, because of the pace that teachers have and the expectations and the responsibilities that they have.
00:43:43.679 --> 00:43:53.840
That doesn't excuse a teacher or a case manager from giving their full attention, I'm just being honest, of what it's like when we sit down at the table to those meetings.
00:43:53.920 --> 00:44:09.119
And so a parent walking in not knowing what their rights are and What their child needs and should have access to is really just, you know, you're kind of behind the eight ball already if you don't know.
00:44:09.280 --> 00:44:13.199
And so I would just really encourage parents to do their homework.
00:44:13.519 --> 00:44:50.960
And if your child has a specific diagnosis, you know, going to legislation online, reading what really is in the IDEA to know what is supposed to be provided, understanding the civil rights laws about discrimination for people with disabilities, those are important pieces of the puzzle that I think parents need so that they can recognize if there are things starting to take a turn, or if you were starting to feel like maybe the child's concerns and needs and wants are not being prioritized.
00:44:51.119 --> 00:44:56.719
I don't think any of the people that are sitting in those meetings are thinking, oh, we're gonna pull a fast one on them.
00:44:56.880 --> 00:45:01.679
You know, we're gonna, we're not gonna do this and we're not gonna provide these accommodations.
00:45:01.840 --> 00:45:03.679
No, it's it's not that at all.
00:45:03.920 --> 00:45:12.480
It's that it is hard sometimes to make a distinction between this child on paper and the five others that they've got meetings about in the same day.
00:45:12.800 --> 00:45:19.440
So the parents really gotta come to the table with as much information as possible.
00:45:19.760 --> 00:45:20.159
Yeah.
00:45:20.480 --> 00:45:26.159
Is there a website or anything that you have followed or used to help educate yourself?
00:45:26.559 --> 00:45:32.960
Well, in some of the classes that I've taught in the past, I was teaching students about becoming teachers.
00:45:33.039 --> 00:45:40.480
And so we would always investigate the 504 act and become familiar with the IDEA.
00:45:40.719 --> 00:45:52.480
And ADA is fine to learn about, but that's really more about access to physical spaces, and that's not necessarily a priority in the educational space.
00:45:52.559 --> 00:46:01.199
I mean, it can be, it is, but it's not as prominent as knowing educationally what you can ask for and what you can hold schools accountable to.
00:46:01.360 --> 00:46:20.239
I don't have like a particular website just you know that would pop right off the top of my mind, but looking at uh the 504 Act and IDEA is helpful, but then every school system should be able to provide those procedural safeguards in writing for them to look through.
00:46:20.559 --> 00:46:21.199
Yeah.
00:46:21.679 --> 00:46:28.960
Um, even with homeschooling, my son's had an IEP because we're unique in Ohio where there's scholarship money.
00:46:29.039 --> 00:46:40.079
If you're homeschooled and have an IEP, but even like I would get sent it's a packet, I get a paper, you know, every time that we would have an IEP meeting, and when he was in school when he was younger.
00:46:40.239 --> 00:46:43.679
And I I do think that that is it is really, really important.
00:46:45.360 --> 00:46:55.039
So as you look back on the past 16 years of your unexpected journey, where do you see God's faithfulness the most?
00:46:55.360 --> 00:47:10.079
Or maybe is there something that you want to share where you just have seen him or just or there could just be an overarching theme, but um just the way that he's carried you through this journey with Spina Betheta?
00:47:12.000 --> 00:47:12.559
Wow.
00:47:13.199 --> 00:47:19.039
I don't how do you really sum up 16 years?
00:47:19.199 --> 00:47:25.039
I don't I don't know because there's just what have you learned about his character, I guess.
00:47:25.360 --> 00:47:26.320
Maybe yeah.
00:47:26.639 --> 00:47:37.280
So I think in Romans, Romans 8 28, where it tells us, for we know that um he causes all things to work together for good.
00:47:37.760 --> 00:47:56.800
I think that's kind of been the overarching message uh for me to learn is that he causes all things, even the hard things, even the messy things, the beautiful things, the teaching moments and all of those things.
00:47:56.960 --> 00:48:26.079
He he's caused all of it to work together and it for good, and that good is to bring him glory because so many of the things that we've experienced have been there's some things that we can help, you know, we can use our brains, we can inform ourselves, we can make choices, but um, some of it has just been straight up God has just provided above and beyond us and has worked in those situations.
00:48:26.159 --> 00:48:28.239
And, you know, he didn't need us at all.
00:48:28.559 --> 00:48:32.400
We've just been the grateful recipients of his grace.
00:48:32.719 --> 00:48:44.880
And then I always think about in Proverbs, I think it's Proverbs 16, 9, where he talks about in his heart a man makes his plans, but the Lord orders his steps.
00:48:45.119 --> 00:48:54.559
And so almost 30-year-old Mandy, who was about to have Madison, had her whole life mapped out and had her steps ordered.
00:48:54.880 --> 00:49:04.800
And God just completely diverted my path into this journey of special needs that I did not need or want or ask for.
00:49:05.199 --> 00:49:14.320
Of course, none of us would, but he has just been so good that on that path that he has worked all things out for good.
00:49:14.480 --> 00:49:22.960
And it even says in Romans later in that chapter that we overwhelmingly conquer in all of those things.
00:49:23.119 --> 00:49:32.400
And so even the things that have been hard, that have been so tough, that have been devastating, we have still gained victory over those.
00:49:32.639 --> 00:49:38.880
And ultimately the victory that Madison accepted Jesus as her Lord and Savior when she was 13.
00:49:39.119 --> 00:49:48.559
And she has the promise that one day Spina befida will not be a part of her reality and she will be whole and she'll be healed.
00:49:48.800 --> 00:49:54.079
And she's gonna get the victory over that through through him and through his plans.
00:49:54.320 --> 00:50:02.079
And I ask myself sometimes, like, would I have known these things about the Lord had he not put me on this path?
00:50:02.320 --> 00:50:30.079
And I know God would would make himself known and would receive the glory in anything that we set our attention on him, but I just don't know that I would have learned it as personally, as intimately as I have, had I not been walking this path that I did not choose for myself, but that God has just been ever present in the whole time throughout her whole life.
00:50:30.960 --> 00:50:31.280
Yeah.
00:50:32.000 --> 00:50:36.880
And on that word, we're going to wrap up because there's really not much more to say.
00:50:36.960 --> 00:50:39.440
So thank you, Mandy, for being a guest.
00:50:39.519 --> 00:50:41.199
This was a wonderful conversation.
00:50:41.360 --> 00:50:45.280
We could probably talk for three hours, um, which I love.
00:50:45.599 --> 00:50:48.480
And um, yeah, I feel the same way.
00:50:48.639 --> 00:50:50.400
So God is faithful.
00:50:50.719 --> 00:50:52.800
Um, we are more than conquerors through Him.
00:50:52.960 --> 00:50:54.000
So thank you.
00:50:54.159 --> 00:50:56.320
And thank you so much for having me, Carrie.
00:50:58.159 --> 00:51:05.360
If you have enjoyed this podcast, would you do Carrie a favor and hit the subscribe button to where you listen to podcasts?
00:51:05.599 --> 00:51:07.440
Also, leave a review.
00:51:07.760 --> 00:51:11.199
This helps the podcast to become more visible to others.
00:51:11.440 --> 00:51:22.000
If you would like to share your story on the podcast, visit Carrie's website, carriemholt.com backslash podcast, and fill out the form.
00:51:22.239 --> 00:51:30.400
You can find Carrie online on Facebook and Instagram, and on her Substack page at CM Holt.
00:51:31.119 --> 00:51:35.199
Thank you for joining us today on this unexpected life podcast.
00:51:35.519 --> 00:51:40.079
Real stories, real hope in this unexpected journey.
