Episode Transcript
[00:00:01] Speaker A: Hey, friend. Welcome to Perspectives into Practice, a place where life's stories meet practical wisdom. Together, we'll explore how faith filled perspectives can transform the way we live, love, and grow.
So grab a seat, settle in, and join us on this journey to turn inspiration into action.
Let's dive in.
Hey, friend. Welcome back to Perspectives into Practice. Today's episode is one of unexpected turns. Deep surrender and surprising peace. I'm joined by my friend Anna, a strong, faith filled mama of four whose youngest child has faced significant medical challenges. Her story is raw, real, and overflowing with God's grace. Welcome, Anna. I'm so glad you're here.
[00:00:52] Speaker B: Thank you so much for having me. This is great.
[00:00:55] Speaker A: I love it.
So before I start any podcast, I love to do a fun fact. And the fun fact for you is that you used to make and sell quilts, which is absolutely amazing and takes so much time and patience. How did you get into that?
[00:01:10] Speaker B: Well, I. I'm pretty crafty. Like, I've been sewing basically my whole life.
And then my grandmother was an insanely good quilter, and so she kind of inspired me to do it, but it wasn't really until I started having babies, but I was like, I have to make them a quilt. And so I make them like a baby quilt. And then I get overwhelmed with how difficult it was and then would stop. And then when my third child was born, I had to come home from working full time because we just couldn't afford three kids in daycare and got bored and decided to start making quilts again. But the quilting world had dramatically changed by then because it was all on Instagram and everybody was doing all these patterns. And so that's kind of how I got back into it. I love it, though. I love making quilts.
[00:02:02] Speaker A: It's so fun. And you could do it. Like, it's a great gift for anyone, any size.
[00:02:07] Speaker B: Absolutely.
[00:02:07] Speaker A: Because it's customizable.
[00:02:10] Speaker B: All of my kids have a handmade quilt that I made them.
We've got. My husband has one. Everybody in my family has, like, there's a Anna quilt in everybody's household. I love it in my family, and I think they're beautiful. Actually, there's one on my floor right now that my kids like to cover up with. I love that.
[00:02:31] Speaker A: So, you know, that kind of creativity and quiet strength is something that I know that we were going to see in your story as you share something. So I want to talk about what it looks like when motherhood takes a turn that you never expected and how God still Meets you there. So, Anna, can you take us back to the beginning of your journey with your youngest, Josie, and tell us when did you realize that this was going to be different than you expected?
[00:02:56] Speaker B: Sure. So I have four kids, and my third child was about 18 months old when I decided to get a puppy because we were done having kids. And then the next day had a positive pregnancy test.
And so that was fun that way.
Yeah, that was fun.
So we had, like, a typical gender reveal in February of 2020, and then we all know what happened in March of 2020.
The world shut down with the COVID 19 pandemic.
And I went in for my typical monthly sort of meeting with my doctor. Everything was normal. I didn't have any suspicions of anything not being normal. And he slid an ultrasound picture across the table from me.
When he pointed to something in her brain and said, I think your daughter has hydrocephalus. Which, for anybody who's listening, it's just a buildup of fluid in the brain.
Your brain needs fluid. Brain fluid to keep it moist and goopy. But a buildup is not good.
So a lot of kids with hydrocephalus typically have what's called a VP shunt, where they insert it and a long tube drains it down into their abdomen, and they pee it out, and it's fine. Wow. So he sent me to. We're Middle Tennessee, so our children's hospital here is Vanderbilt, and it's really great children's hospital.
And they sent us over there to just kind of get checked out by their maternal fetal center. We prayed hard. We had our, like, our small group come over and pray. You know, nobody was going in anybody's house at the time. So, yeah, I told them, like, oh, it's not a big deal. It's totally fine. We're gonna go, and they're gonna say, what? Hydrocephalus? I don't see anything. Yeah, I was really nonchalant about it.
Really, like, chill.
And I remember going to the doctor. It was the first time I'd worn a mask. It was the first time I wore gloves. And the first time I had a big old panic attack about the panic of COVID 19. Like, everybody was terrified. And I. It hit me real hard in the elevator going up to my appointment. They said, no, your daughter doesn't have hydrocephalus, actually. And I was like, oh, that's good. They said, she has a whole laundry list of other things that is wrong with her that are very scary. And I was like, oh, what? And so we set an Appointment to come back, like, a month later. And in that month, there was more prayer. There was more like, God's gonna fix this. We just have to stand and believe, and he's gonna heal her and everything's gonna be great. We went back and like a month later, everything was exactly the same as it was the month before. Before. Yeah. All those things that we found that were like, wrong in quotes. Right. With her. Yeah. We call them genetic, like anomalies. Right. Were still there. And so at that point, a lot of people were mad at God for me. Yeah. And, you know, standing in my honor, I mad at God for not fixing it. God's gonna heal her. You just have to believe.
And at that point, is.
Is when I started to kind of like, I looked at my husband and I said, I guess we're special needs parents now.
Like, our daughter is special needs. And it just kind of hit us like freight train because our other three were perfectly fine, like, perfectly normal.
No problems, no NICU stays. My son, my second child was even born at home. Like, really typical kids. Then here's Josephine with, like, the most opposite of typical.
[00:06:37] Speaker A: Yeah.
[00:06:38] Speaker B: And so at that point, even before she was born, I had to start, like, coming to terms with it in my head and say, okay, God, what is happening? You know, like, there was a lot of question marks around the end of the pregnancy because I had a doctor telling me, like, I really, I know that you don't have any markers for Trisomy 18, but I really think this is Trisomy 18, which is like a life limiting condition. The doctor, I asked him to really shoot straight with me. I didn't want to beat around the bush. I wanted to hear straight from the doctor's mouth, like, what should I expect?
And he said, I really think that your daughter is very severely, neurologically disordered due to some things that we found on the ultrasound. And the ultrasound things that we found were consistent over time. So it wasn't like working itself out. Sometimes that happens. Sometimes things just work themselves out. You know, something you're concerned about isn't really a concern because then it like disappears the next time you see them. Right.
My issues never disappeared. They got worse. And so I had something called polyhydramnios, which is a very high level of amniotic fluid.
[00:07:48] Speaker A: Yeah.
[00:07:49] Speaker B: And so you're supposed to have between 8 and 18 centimeters that it's the black stuff that surrounds the baby. On the ultrasound, I had 40, so I'm supposed to have 18. I had 40, so I'm more than double of what you're supposed to have, which can be very dangerous because then your belly can explode, essentially. Right. So she was born five weeks early, but I was measuring over 40 weeks with how big my stomach was.
And so I just was like, shoot straight with me. I don't want to sit here and have a doctor lie to me or sugarcoat something because it's easier or they think I can handle it better.
And he said, I really think that your child has the same severe neurological disorder. So my husband and I were like, okay, we're gonna have a vegetable.
Like, she's gonna be bed bound, probably hooked up to a bunch of machines. Okay. You know, and I very much. I didn't tell anybody this until way after she was born, but I seriously thought I was gonna give birth to her. I always thought she was gonna be born on a Friday, which she was, ironically. But I figured I would give birth to her on a Friday and then come home on Sunday and bury her.
Like, I didn't expect her to live.
[00:08:59] Speaker A: Yeah.
[00:09:00] Speaker B: I expected her to be born and die in my arms and then I would bury her. That was really like what I was thinking was going to happen because of how severe she looked on the ultrasound. And so it was like I went through the last couple months of my pregnancy going to the doctor a couple times a week. We had to hold on for dear life from the very beginning.
[00:09:24] Speaker A: Yeah.
So how. How did your faith shift in that season?
[00:09:30] Speaker B: So I will say, my husband and I always say that we were thankful we had. We were not newlyweds. We were thankful this was not our first baby. And we were thankful that we had an already established strong faith in God, because that is where things get real rocky, you know?
And I remember when she was born and she. She spent two months in the nicu and she came home. I'm struggling to, like, take care of her and take care of the other kids. And it's Covid and are they going back to school? Are they not? We had brand new neighbors move in next door, and I didn't know them. And I'm super protective of, like, kids going into other kids houses and kids yard, you know, and so I couldn't take care of this, like, helpless baby and take care of my other kids. And then my husband was like, trying to save his job because Covid and all these things. And I remember just being completely and utterly exhausted on the couch. And I just, like, at night, everybody was finally asleep. We had the pulse oximeter going so we could hear if she Moves in the middle of the night. I just remember crying on his shoulder and being like, I don't understand why God picked me. Like, I am unworthy to take care of her. She is too precious and too special and she needs somebody that is more qualified. I'm the last qualified person in the whole wide world to take care of her because she's so medically complex. I was just like, I don't understand, Lord, like, why you picked me. I'm unworthy to take care of her. You should have picked somebody that has a nursing background or left brain dominant or doesn't get squeamish at the doctor's office, doesn't hate hospitals like I do. We needed something better. But I would say the biggest thing is that, you know, I heard this quote recently that said, in times of tragedy, you don't rise to the occasion. You fall to your level of preparedness.
And I think that's really true in this kind of situation that people either turn to God or they turn to substance because you have to deal with it somehow. I dove into several Bible studies. I said I need to. I just needed to wrap my brain around something that wasn't medical complexities. I got her name from Genesis and was doing a Bible study on Joseph right at the end of the pregnancy and then into her NICU stay. And then I ended up getting it tattooed on my arm.
[00:11:57] Speaker A: I love that man.
[00:12:00] Speaker B: But it's really more. A lot of it is about life will test your faith for sure. And when it happens, when life happens, it's going to show if you really truly trust that God's going to take care of you or if you're a fair weather friend with the Lord. Right. I'm only here if you bless me, but if you walk me through something that is horrendous, am I still going to trust you? Even if Josephine was born on a Friday and we buried her by Sunday, do I still trust that the Lord has her ultimate good and my ultimate good in his hands?
[00:12:31] Speaker A: So how has your perspective shifted from thinking that you were going to be burying her on a Sunday to now? She has all of these medical complexities that seem to continue. Right. Like there's even more things that you didn't know in the beginning and things that keep developing as she's gotten older. Yeah, as she's gotten older, I kind.
[00:12:51] Speaker B: Of hold, in my personal life, I hold on to the fact that God does not promise you a certain style or caliber of life. Yeah. You know, like when they say a lot of times people Talk about quality of life, especially these days, recently with, like, talk of, like, abortion rights and women's rights and stuff. Yeah, people talk a lot to me, especially my DMs, about quality of life. Well, what kind of quality of life are we promised? We're not promised, like, any kind of quality of life. And so if. If Josie was born and lived for eight hours and died in my arms, then that's her life. That's the life God wanted her to have. And that's why, like, I. I would have carried her until the very tippy end, you know? Would it be hard? Of course it's going to be hard. You know, of course it's going to be traumatic. Of course. And now, as things go on, like, it's still like a walk every single day of trusting that God still has Josie's best interest in his heart. And we've walked through a lot of difficult times with her. It's. It's. For me, a lot of it is people ask me these big, grand questions, like, will she ever leave your house? Will she ever get married? Will she ever do this? Will she ever do that? And they've asked me that from the very beginning. Like, people ask me, will she ever go to kindergarten? Will she ever walk? Will she ever talk? Will she ever do this? And, like, I can tell the future, right? And I'm like, I don't know. Will she wake up tomorrow? Like, you know, are we gonna go to the stop sign and a car hits, you know, kills us. Like, I don't know. There's no way for me to know, right? And so for me, I never like to think more than just a couple of months ahead, maybe six months, maybe a year ahead. I don't. I don't like trying to wrap my brain around more than that, because we really aren't promised tomorrow. And we're really. We're only promised this moment that we're in right now. And so that's how I handle it with her doctors, too. I. I told them, I'm like, I only like to look about six months to a year out because we never know if we're going to go to the doctor tomorrow and find another very progressive, aggressive situation in her body. And I don't want to have all these things planned out for the next three or five, three to five years, and then go, well, that's all gone now, you know, because then you're sowing your energy and your emotions and your planning and all of that directly into the fact, oh, we're going to have this surgery and then this and then this and then this. And then something pops up, and you're like, well, all of that's gone.
[00:15:15] Speaker A: Yeah, well, because things change so fast. I mean.
Yeah. You don't know from one day to the next what her body's gonna do or show or tell you.
[00:15:23] Speaker B: Right, Right. And so two years ago, I thought I was gonna go and see her ent who handles her trach, and he was gonna say, let's get rid of the trach. She doesn't need it anymore. That's not what he said. He said we need to hold onto it for a couple more years. It's not the news I wanted to hear, but it is what it is. And then that was in the fall, and then by the spring, we found her aggressive scoliosis. And then all the dominoes just fell. And then 10 months later, she had back surgery, and we were coming in every three weeks to look at her to make sure we didn't need to go in immediately. Things can shift so fast. So fast.
[00:15:58] Speaker A: Well, was there a turning point that you maybe began to see that this. This wasn't what you expected, but it might have been what you needed from the beginning.
[00:16:07] Speaker B: Even when she was in the nicu? Probably not when she was. When I was still pregnant, but when she was in the NICU, I remember staring at her all day, 12 hours a day. Sometimes be allowed to hold her, sometimes I wasn't. There was two and a half weeks where I couldn't even pick her up because of all the things she was attached to and recovering from. And I just remember being like, God, what are you trying to teach me? There was some pretty dark moments where I thought, like, I could just walk out and never be her mom again, and somebody else can be her mom. She'll go into the foster system, you know? Like, I felt very raw and was like, that. This is how people feel when they don't have a spirit support system or when they're a single mom or when they're 16, have a baby like this. But I was like, lord, what do you. What are you trying to show me? And we are still trying to figure out, like, what does life look like with Josie, especially those first couple of months home from the nicu. Like, I had a job.
[00:16:57] Speaker A: Yeah.
[00:16:57] Speaker B: I had ambitions. I had plans. I was gonna, like, had all these plans for my. My life. And then we got pregnant with her, and I'm like, oh, another baby. Plans will be delayed just a little bit, right? Yeah. Let's get this baby off the kindergarten. And then I can go back to my own life. Right? I can go back who I want to be. Very quickly realized that all of the plans I had formulated for myself were gone. I was going to open Montessori preschool in my area. I had a name I was working on just in my spare time, a mission statement. I had started collecting furniture and supplies all up in my attic. Thousands of dollars of things that I had just been collecting, because that's what I did before my third child was born. And I was, like, sold out on it. I feel like Nathan and I said that when Josie was born and we realized the width, breadth of her condition, we just watched our hopes and dreams, like, sail off in a Viking funeral. I don't know what God has for us, but what I thought he had for us is gone. What I thought my life was gonna be is absolutely gone. And that is really hard. Yeah. Because then you go. You wrap up your whole being in this particular vocation or where, you know, some people move, you know, they have to change homes and that kind of thing. All that you are, that you thought you were is now wrapped up in this tiny bundle of wires and onesies and casts and trachs and suctions. And I was now feeding my kid through a tube. You know, I didn't get to breastfeed her like, I did all my other kids better through a tube. I had to suction her. If I didn't suction her in time, she might die. You know, like, somebody's, like, literal life is in my hands. And I was like, okay, God, what are you trying to show me? What am I doing? Why did you pick me? You know? And then people would say, you're so strong.
You're so great. You're so wonderful. God picked the right person. He must really trust you, you know, like. And I was just like, huh? Yeah.
[00:18:59] Speaker A: You have no idea what's going on in my brain. But, okay.
[00:19:03] Speaker B: Yeah, I can't even get dinner on the table. Like, the floor hasn't been swept in days. My. My bro came. He came and stayed with us for an entire month, for when Josie was very first discharged just to be another adult here. Extra hands, extra adult. And I told him, like, his presence was so calming here. I needed that. I needed to be chill. I just needed to be relaxed, right? And our. We had a new puppy, right? She wasn't even a year old yet. She was like. He goes, is there a reason she doesn't have any water?
Not, like, rude or anything. Just broke down crying. I Was like, because I can't handle it.
And he goes, I'll get water, I'm sorry. And he goes and like, fills the water up for the puppy. And I was like, I can't deal with life right now. And I got a new dog and a new baby and for like three other kids. Oh, my gosh.
[00:19:55] Speaker A: Yeah, that I. You know, they don't send you home with the manual when you have a typical child. Right. But they definitely don't send you home with one with that. And you, they, they give you all of these things to do. And, you know, I feel like what you said, like, you might not feel equipped to be able to do this, but the Lord knows your plans. He knows his plans. He knows what he is equipping you to do. And, you know, I know that God has, has really shown up for you in some, you know, some ways. But can you share any grace moments with us? Times where you maybe felt at peace in the chaos, like when your brother came, or any scriptures that grounded you in this chaotic time, whether in the beginning or now.
[00:20:43] Speaker B: So in the story of, in Genesis with Abraham and Hagar, Hagar was his second wife or his concubine, I guess. And Sarai was mad because she couldn't have a baby. And you can go, you can go read it. So Hagar is been sent away. She's got her tiny baby and she's, she's gonna starve to death, essentially. And she is sitting there just like bawling, crying. And God comes down, like, talks to her and says, you know, why are you crying? She said, well, you, my mistress, like, sent me off. I'm gonna die here. And he said, no, you're not going to die. Go back to your mistress. You know, the whole thing. She looks up and calls him. It's the only time this word is used in the Bible. But this name of God, El Roy R O I and it's. You are the God who sees me. And it's not just like I can visually see you, but like search sees deep inside you. I've kind of clung to that over the course of many years where there's things that you can't really explain.
[00:21:41] Speaker A: Yeah.
[00:21:41] Speaker B: To anybody. That's not just you. You just get it. There have been several times in Josie's life where I'm like, Elroy, you know, I've considered getting it tattooed on me somewhere. But like, he really is like the God who sees each one of us, each like me as a caretaker, but then also Josie, he sees her and he sees her better than I do. He knows her better than I do and loves her more than I do. And so there are a lot of times when there's just like an unexplainable piece that passes all understanding. There was one time when she had her third brain surgery. She had something called a frontal orbital advancement, an foa, where they went in and they basically took the bones of her forehead off, rearranged them, and plopped them back on to give her eye sockets, her orbits, more space.
[00:22:30] Speaker A: Yeah.
[00:22:31] Speaker B: Her face completely changed several times in her life, but that one in particular, and we knew it was going to be a hard surgery going in. She was sedated, like, completely knocked out for about four days, three or four days, through a pretty heavy cocktail of narcotics. Yeah. And it was. It was a dance of blood pressure would get too low, so then they'd have to pull the narcotics back, get her blood pressure back up. But then she'd try and wake up, so then they'd have to, like, knock her back out again, and then her blood pressure would drop. And so it was just this dance for several days. And I never left her side. Like, I was right there. The only time I left her side is when the night nurse kicked me out and said, go sleep on a flat bed. They have these family rooms at our hospital. Go sleep on a flatbed with a real comforter and a real pillow and go like, take your shoes off and be alone for a minute, you know? But I remember when they. They woke her up, she seemed off it. Like, off in a wrong way. And it's hard to explain, but there was a couple of head movements she did when she was tiny and, like, really, really sick. Right. I noticed when she was in this moment, and she was very floppy, and she wasn't really, like, tracking with her eyes. Neurologically, she was fine because they can hook her up and see the things are firing. But something felt really, really wrong. And I thought for a second that my decisions as a mom just made my baby brain dead. And I looked at her. We were in a recovery room, like, a step down, you're about to go home, recovery room. And I looked at her, and it just smacked me in the face, like something is really, really wrong. And I just shut down. I probably could have collapsed on the floor, like, if I wasn't stronger. And I wanted to, like, hide, curl up on. On the couch that they give the parents and just, like, bawl my eyes out all night long. Because I thought, I've ruined my child. I just. I just ruined Her. I didn't kill her, but I basically killed her. And then I just felt like God was like talking to me like an Elroy. Like, even if you did, she needs you. Go be with her. Don't hide, don't run away.
You said when she was born that even if she lived for eight hours and died in your arms, you were still going to be there. Go be there for her now.
And so I go over and you know, she's in a pediatric bed, so like a bed that could fit up to an 18 year old. And so, and she's little, so I pulled the side gate up on the far side, made sure it was at, and pushed the side on my side down and I shoved her over as gently as I could. You know, she just had head surgery and I got in bed with her. And then from that point on, like I did not leave her until I did not leave her side unless I absolutely had to. And she went from like not tracking with her eyes and just flopping and she was drooling a lot and like there was a lot of problem, like just, just off and then slowly she would like plop one leg over on top of my leg or plop her arm over, just wanting to like, touch me, you know, just wanting to be there with me. And she would go in and out of sleep. It took probably a whole week before she was herself again. But in that moment I was like, okay, if she dies here on the bed tonight, we're going to be together because like, I'm not going to leave her. I've been putting her life for a reason. That, that was pretty traumatizing.
I had to unpack that with my therapist.
But one thing has stuck with me again. From Genesis is like one of my favorite books in the Bible. I got her name from the story of Joseph. And if you recall the story of Joseph, you can, you can go read it. A summary is that he was the second to youngest of a bunch of brothers and God sent him some dreams that he was going to be king or he was going to be ruler over all of them. And they got really jealous and his dad favored him, so they got really jealous.
So they threw him into the bottom of a pit and they were expecting him to just like starve to death.
We find out later in the story that he was like screaming and calling for them to get him out and they didn't. And the brothers just finished their lunch and you know, went on and then some Egyptians came and they, they sold him into slavery and then he Ended up, like, rising to the top. And then he got thrown in jail. And, you know, so he just kept, like, rising and then falling and then rising and then falling and then rising and then falling. That story has always been one of my favorites. And so I thought, like, I'll name my daughter Josephine, because I love the name Josephine. And I looked up the meaning. I was like, it's my favorite book in the Bible or favorite story in the Bible. And the story means May Jehovah add.
So her name is Josephine Grace. So it's May Jehovah add Grace. And I figured this name out before I knew of any of her issues, you know, or any of her anomalies. I was doing a Bible study in the ICU next to her bed during this time. And, you know, these Bible studies from Lifeway come with videos.
And I had watched a video about when he fell into the pit, and it said, the Lord was with Joseph and he prospered. The author of the Bible study kept saying, like, let me explain this to you. It did not say, the Lord was with Joseph. And he rose out of the pit and punched his brothers. And everybody knew what they did wrong. It was that he was in the worst of the worst place, and God still prospered him.
He was still able to prosper even in the worst possible scenario of all time. I carried that with me in the NICU when there was all these question marks of, like, she was suffocating and dying in the beginning, we couldn't figure out why. And then all these nurses and doctors were asking me questions about her, and I'm like, I just met her, like, five days ago. I have no idea, you know, And I didn't know how a hospital worked. And it was Covid. And it was. It was horrible, horrible situation. And I remember the first time she had her very first surgery in the hospital. She was two weeks old. And I watched them wheel her. I had this impending doom, like, pit, right. And I thought she was gonna die that day. And I remember driving into the hospital that day with my husband, and I'm just, like, crying. And he goes, what is going on? Why are you crying? Also, I'm postpartum. Of course. I just had a baby. Yes.
So I'm emotional. And I said, I really think Josie's gonna die today. And he's like, why would you say that? I said, I don't know. I just have this hit in my stomach that she's gonna die. And so, you know, when they wheeled her around the corner to take her to the or.
I just couldn't stop crying. I was like, she's going to die. And so then the verse popped up in my head. The Lord was with Joseph. And I was like, even if she dies, we can still prosper. Her name can still mean something.
God can still add grace to our life even if she dies, you know. And so then they brought her out of the or. She, you know, she didn't die. Brought her out of the or. It was another one of those, like, it's not what we thought, it's much worse.
And the ENT was like, I really think she needs a tracheostomy tube. He explained it to me and I was like, okay, that's fine. And then, then I went back into the room.
We had to change NICU bays. We went from like a step down unit to like the more intense unit. And I went from having this, all this counter space for all my tchotchkes to like, nothing. Yeah, I had a rocking chair and you don't put stuff on the floor in a hospital. So I had to like hook it, hook all my purse and stuff on the back of the chair. I didn't have any water. Like, I didn't, I mean, and I just couldn't stop crying. Like, just sobbing and sobbing. I. I literally repeated to myself over and over, the Lord was with Joseph, the Lord was with Joseph. The lor. With Joseph. The Lord was with Joseph. Because that's the only way I could literally get through that day. And then a couple years later, I got a tattooed on my arm. Yes.
[00:30:15] Speaker A: Keep it forever.
[00:30:16] Speaker B: Forever. And then I found out later, the anesthesiologist that was working on that case was lovely. And remember, in Covid, you didn't touch each other. Nobody was giving me a hug. Nobody was like, had their hand on my shoulder, nobody rubbed my back. Like, there was no physical contact.
The nurses were terrified of my emotions. But the anesthesiologist really made a strong connection with me and he took his glove off and shook my hand.
Skin to skin contact. Remember, we didn't do that back then, you know, in that little span of time. Absolutely not. And I thanked him for doing that. And he said, I would never, I've done this for 10 years. I would never not do that. And then afterwards he came and told me about, you know, gave his little report and something had happened in the OR where they had taken her nasal cannulas off and didn't intubate her fast enough and her heart rate dropped and they had to do chest compressions and he said, I think she's fine. I don't think anything happened. I think we got it pretty quick because he had promised me, I'm going to keep your baby safe. And he said, I did my very best. And I said, I know you did. And he gave me a hug, gave me a real quick hug, and then ran off. Come to find out later. He told me this later, and he said, there's no way you would have known this, but my son was in an icu, in a NICU that's like a neighboring hospital, and he was fighting for his life over there. And seeing you torn up over your child took. I know exactly. I knew exactly how you were feeling. And I said, yeah, I went home and cried the rest of the day. He said, I did, too. And he said, and it's so wonderful to see her thriving now, you know? And I was like, well, there you go.
[00:31:53] Speaker A: Yeah.
I mean, I love that the Lord continued to put specific people in your life to show you that God is still there and for you to be able to be that light in other people's. Like, we are still here, and we are still pushing for all of the good things, and we are still with Jesus, and we haven't given up hope because that's not. It's not in our vocabulary, you know? And I love watching your story because we've. I don't know if you remember, we've known each other for a long, long, long time.
A long, long time before any of us had babies. But I love watching the journey of your family and now seeing this new journey with Josie. Just everything that. That you've gone through and she's gone through, and you're. It is inspiring. And I know that that's hard to hear because you are just being as strong as you can be, but you are inspiring in the trenches.
[00:32:44] Speaker B: Yes.
[00:32:45] Speaker A: Yes. But you are inspiring for us that see that. And I know that you show the good, the bad, and the ugly online, and I am. I praise you for that. Because that's hard to show the. The hard parts. Because people don't. You know, you think, oh, people don't want to see that part, but that's important for everyone to see, or people.
[00:33:04] Speaker B: Only want to see that part.
[00:33:05] Speaker A: That's. Yeah.
[00:33:06] Speaker B: You know, a lot of people I know in the medically complex world, they only show how sad it is, or, oh, my son was laughed at today, or, you know, like, that kind of thing. And I try and show all of it, and.
[00:33:21] Speaker A: And you do. I think you do a good job.
[00:33:23] Speaker B: Out of respect for her, I don't want to show, like, I'll never show her in the bathtub or I'll never show her, like, you know, because the Internet lives forever and so.
But I also, like, I posted something yesterday about her hating her back brace. Yeah, this is life. Like, this is hard. And sometimes I think we got really, really comfortable. And right before the scoliosis thing hit, you know, and so we were like, I don't want to get comfortable, you know, because you've got to always be on your guard.
[00:33:51] Speaker A: So speaking of that, what is, what is your day to day? What are the practical things that help you stay spiritually grounded when life is heavy? What are some things that you do or your family does to stay in the moment?
[00:34:04] Speaker B: Now, a lot of that is we have. We've taken like our big bubble of acquaintances and things that we do and gone and made it small. Right. We really, really, really prioritize our nuclear family. I don't go out of my way. This may sound terrible. I don't go out of my way to help other people if my family isn't first taken care of. There's so many times that I see a need. I'm like, I could fill that need, or I could fill that need, or I could fill that need. And then I go, nope, it's not my season. I would love to tell you that I am very faithfully reading my Bible and praying every day. And I don't, you know, I. I don't, but I do a lot. But I don't do it on a regular basis because sometimes your girls just. I hear you, but there's always that, that like, still small voice there, you know, but practically on a daily, on a daily or regular basis, we, we try and make church a priority. We have found a very strong, biblically centered church that we just love.
[00:35:08] Speaker A: It's ours favorite too.
[00:35:09] Speaker B: Here in town.
[00:35:09] Speaker A: We watch online and that's so funny.
[00:35:13] Speaker B: We, you know, I was on church there. I was on staff there for about a year. And so we're connected really nicely with that group. And I do volunteer on Saturday nights. And when we go, I help kids get checked in. When my kids are like, I don't want to go to church. Church is boring. I hate church. You know how kids are. I'm like, no, we are going to go because this is important. Because again, when tragedy strikes, you don't rise to the occasion. You fall to your level of preparedness. And I want to be prepared for life's struggle. We do things like events. Like, we volunteer together or My husband is a very active job where they have events where we can go, you know, do things for other people. So we try and do that. We try and do things as a family as much as we can. There's only so much we can fit into our schedule with four kids in school and after school activities. And at some point, we need to, like, eat.
[00:36:05] Speaker A: Yeah, well. And you do, I think. I mean, from what we see on this side is do a good job of taking care of your bodies, making sure that you're eating well and that you're taking the supplements to take care of yourself and moving your body.
[00:36:17] Speaker B: I take lots of supplements. I'm training for a marathon right now.
We try and be outside.
You know, it gets real hot down here. So, like, we try even just standing on the front porch, you know, that kind of thing. I went on a walk last night with. With Josie and the little dog, and we. We don't eat a lot of junk food. Like, we're not completely so strict that we're not. Sometimes we'll stop through Taco Bell, that kind of thing. But. But also, that's not part of our regular diet. We try and cook all of our meals as much as we can. I try and limit my caffeine intake, even though it's sitting right here next to me. Like, we drink our water. We drink our electrolytes. We talk a lot about health and being healthy and what does it mean to be healthy? That food is fuel. Like, what does protein do? What do carbs do? What does a banana do for you? What is cheese gonna do for you? Like, no, you can't have two donuts today, that kind of thing.
And we work together. I always tell my kids we work together to run the house together because we all live here. Mom's not cleaning everything up after everybody. I certainly don't do that. We're very open and honest about our struggles with Josie as a member of the family, because Josie does change a lot of things. Like, we didn't go to the pool all summer because Josie was in leg casts. And it would be very unfair for us to take her to a pool when it's 95 degrees outside and she can't get in the pool and she's overheating. Like, that would be really unfair. We talk very openly. Like, it really sucks that we can't go to the pool, and it really. It's really annoying that we can't. We have to be very careful with Josie around water. So, like, it's very annoying that we can't do xyz, but Josie does afford us a lot of cool opportunities we would never have if Josie didn't exist. We've learned to be better humans because of her. My kids react around disabilities so much better than they would have ever done because Josie lives in our house.
[00:38:19] Speaker A: You know, I love that you get that opportunity to. Not only they see it firsthand, but they're able to share that with others and then use that. It's so important to teach our kids not just about taking care of yourself, but taking care of others and that the consequences of our actions. Right. But how others can. And I love how fiercely protective they are of their sister.
[00:38:47] Speaker B: They are. And I'm telling you, I. I don't know if it's parenting or if it's just I've got great kids or maybe a combo like when we dropped the kids off. So Josie's now in kindergarten at our local elementary school. And that took moving mountains to get her there. But it has been wonderful. And we're dropped. We drop her off in the, they call it the contained classroom. So like the special ed classroom, the controlled classroom. And then from there she goes, her kindergarten room. But I just dropped. Have all three of my elementary kids there. So a second grader, fourth grader, and a kindergartner in the same little entrance. Harrison always, he's my 10 year old, he always comes around to Josephine's side and gets her very heavy suction bag and her backpack and takes it in for her along with his own stuff. And then he will, when we come to pick him up, he'll, he'll bring all of her stuff out. And so there are times when I have to take all of them to a very long day of doctor's appointments, you know, and it's obnoxious. It is, it's obnoxious. We're tired, we're hungry, we're thirsty when it's all done. But I tell them, like, if you guys behave and you listen and you or whatever, I'll give you a donut, we'll go get ice cream, you know, like that kind of thing. And I, I'll be like, you guys are doing great. You're doing wonderful. Like, you know, this hard. I know, but still, we're working on it, you know, but they are, they're amazing. Or I'll, I'll yell. I'm like, I need help. And they just come running. They're like, what do you need, Mom? I'm like, get that bag. Put the suction in there. Grab some diapers. We gotta go. We gotta go. Oh, my gosh.
[00:40:16] Speaker A: Well, you know, this. This has been amazing. And there's a question that I ask at the end of every podcast that what is one perspective that you would encourage listeners to apply today?
[00:40:27] Speaker B: I always like to tell people that you are not a victim of your life circumstances. Talking specifically to medical mom or special needs moms. Your child's diagnosis does not define them, and it does not define you. Yeah, I know people who have their children have very similar diagnoses or life situations to Josephine, and they take in the complete opposite perspective as I have, and they. They're very miserable. They can't stop thinking about it, you know, But I'm not a victim of my child circumstances. I love that. And as soon as I can, like, allow myself to believe that, like, I'm certainly not, then it just changes everything.
[00:41:07] Speaker A: Oh, for sure. Because you see things with a different lens when you change that.
Oh, I love that. Well, Anna, this has been amazing, and I appreciate you being here and you sharing.
And, you know, you might not have chosen the story that you're living, but I can see that God's goodness is still found within you and your family friends. If Anna's story has encouraged you today, would you please take a moment to follow the podcast? Share this episode with a friend that might need it, and remember that you even small shifts in perspective can lead to big changes. Now go put those perspectives into practice. Talk to you next time.
