When Life Is Up-Ended: Lessons Learned with a Chronic Illness Child, & Lisa’s friend, Hasin!

When life is not what we expected, it’s easy to feel isolated and alone. Encouragement and hope can be hard to find!

Lisa’s friend, Hasin, had her world up-ended.

Surprised “in the best way” by a pregnancy, giving birth at 26 weeks old, basing for 11 months away from family in a hospital intensive care for newborns (NICU), and now her daily reality of caring for a young child with a chronic illness – what a roller coaster!

In this honest, fast-paced conversation about lessons learned when life is turned upside down, there are sobering moments, yet hope and humor. 

Whether you or someone you know are walking through an uncertain and unexpected season, listen in and you’ll find tons of practical encouragement!

Transcript

SPEAKER_00 0:01

Welcome to Thrive in the Mess. I'm your host, Lisa Hutchcraft Whitmer.

SPEAKER_01 0:08

So hey friend, welcome to Thrive in the Mess. I'm glad you're here and I really hope you find some encouragement. I have my new friend, Haysen. We connected online a few years ago

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and she was expecting a baby and was pretty sick and I was like, oh my goodness, I was pretty sick during my pregnancies and just reached out and wanted to encourage

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her. But she's here to encourage us today and we are going to be hearing from her about walk We're talking through the mess of having a young child with a chronic illness. And Hason, I'm so glad to like meet you in person and to have you here. And we've kind of followed each other for a while on social media things, but you had, you were pregnant a few years ago and you had a baby

SPEAKER_00 1:01

and just kind of take us back to that, like your pregnancy and... And I was coaching volleyball, and I got pregnant with my fourth baby. So she was a surprise, but in the best way. We were kind of like, God, just if it's your will, then we're going to have a baby. And so I had had great pregnancies with my other three. I was like, ooh, this will be a breeze, just like all the other ones. But instantly from the beginning, I was sick, very sick. And so I knew something was going on. Didn't feel good pretty much the whole time. Tried to push through it. And at about halfway, it was 20... I guess I was 25 weeks. I remember I was in class, I was teaching and I had to sit down and my kids were like, you don't look so good. And I told them like, I'm not, I don't feel good. So I called my mom who has 25 weeks. Yes. Had, you know, my mom has lots of children and I was just like, here's what I'm feeling is this labor. Cause I've had C-sections with all mine. So I had never actually been in active labor before. And so she was like, you're in labor. Like is what it sounds like. So I went to the ER and of course they're like, we'll just monitor and all that. So the funny thing is, and why people are always like, you're crazy. My husband coaches basketball and he had district tournament that night. So they said, we want to keep you and monitor. And I said, well, listen, I have to get to the game and it's a three hour drive from here. So I'll stay for an hour. But like, if we can't figure out what's wrong and if it is just kind of like me being a baby, then I'm going to the game. And so they said, we'll make you a deal. You are a coach's wife. You can stay and we'll monitor for an hour. And then we're going to like send you home and like do an overnight urine test, you know, because that's how they figure out what's going on. So I'm like, cool, let's do that. So the next I go to the game, everything's fine. I have pictures from the game, you know, smiling, fine, everything's great. And the next day, for some reason, when I went to drop my other kids off, because I have three other kids. I was going to drop them off with my sister and go to the hospital. I had to do another. They were like, you'll stay for about three hours and do more monitoring. And this little voice in my head said, take her with you. So my sister was like, you want me to go so you're not bored? And I said, yeah, come with me. And that way I'm not sitting there for three hours, you know, bored. So for whatever reason, last minute, I said, well, obviously not whatever reason. God was telling me, take a driver.

SPEAKER_01 3:18

We

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go and, you know, long story short, we were there for a while, but my blood pressure was so high that they wanted me to go by ambulance. Oh, okay. Wow. You know, we haven't eaten yet. You're like, I went

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to the game. Come

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on. Exactly. We haven't eaten yet. And she was like, I'm starving. And I was like, I am too. So she said, well, can we drive ourselves? And if something happens, we'll just call an ambulance on our way. You know, and we look back on this and we're like, we're so not smart. And so they were like, I mean, yes, but you can't stop anywhere. You have to get straight to the hospital. So we're like, you're like, we're getting food. We're hungry. We went to Chick-fil-A. So we went to Chick-fil-A, go to Springfield and I get to Springfield. And they're like, you're not supposed to be walking or like anything. So everyone's acting like it's crazy. I didn't know what high blood pressure, like what numbers were bad. So anyway, I was admitted. I was there for a week on constant magnesium and steroids. And at the time... Was that to like stop labor and to help the baby grow too? To keep her in. Okay. The goal was to get her to grow as much as possible before my... Like, before me having a stroke. It was kind of like a race, like, to see what could

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happen. Oh, my

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goodness. So I was on, like, all these blood pressure medications and all of that. So... No pressure with them trying to... She was fine on monitoring. She was fine. Active. Great. They were like, the baby's great. She's just really small because, you know, she's only 26 weeks, you know, at that time. At that point. Well, then, of course, they bring in all these doctors to talk to you. And... one of the blessings of that time in the hospital was the doctor, I was a preemie, and the doctor who delivered me came to visit me. And she remembered, she was like, I've delivered thousands upon thousands of babies, but like yours was a weird case because like your mom literally had you and, oops, and you know, you went home and you were just this tiny little baby. And you were fine. So I got to meet her, which was really, really cool. And she told me, she was like, whatever happens, God kept you alive for a reason. God will keep your baby for a reason. And so I did get to meet her. What comforting words to hear in in the middle of... that going on yeah because it was scary because I was just like I don't feel bad right you know like I'm uncomfortable but like why can't I just keep her in right you know and of course now looking back I think the biggest thing at that point was I had a lot of like guilt like if I wasn't such a baby they wouldn't have put me into the hospital if I hadn't complained about it they would have never put me in there if I hadn't pushed my doctor telling her something was wrong I never would have had to have had her early so that's kind of how how I went into it I fought kind of tooth and nail to like Not have to have her. But on the day that we had her or the night, it was like nine o'clock at night. The doctors just came in and were like, my husband was fishing somewhere. And because that's what he does. He's a fishing guide. And they were like, he has an hour to get here. Like we have to we have to get her out. And so... Was he out on a river somewhere fishing? No, he was at the lake. Like an hour to get there. He was at the lake. He did get there. But so at 27 weeks on the day is when she was delivered.

SPEAKER_01 6:38

Wow.

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Okay. So... Were you okay at that moment? Like, does blood pressure subside right away at that moment? No. Or did they still have to take

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care of you and what was going

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on with her then? They did, yes. So when we went in to have her, the only request that I had was that I wanted to watch because I hadn't got to see any of my other ones. And I was like, I want to watch you do the C-section. And so they were like, I mean, if you want to, that's fine. Well, my anesthesiologist and my husband were like, absolutely not. And so they put the sheet behind me so that they couldn't see anything, but I could. And So when they, you know, they cut you open and, you know, if you've had C-sections before, then you're like, whatever, it's fine. But the one thing that I noticed was like, I wasn't bleeding. Yeah. And I was like, that's weird. Is that normal? No, because the doctors even, you know, there's a ton of doctors in there and doctors for her and doctors for me. And they were like, hmm. And they scooped her out. And of course, she's bleeding. I mean, dead. Like, it looks like she's dead. She's not breathing. And so they handed her over. Well, at that point, I'm like crying, you know, because I'm like, she's not crying. And I don't know why I expected her to cry. And were they concerned you could even have a stroke at that moment too? They were. So the anesthesiologist like gave me something else. So then I was kind of out of it. But my husband, like he went, you know, I was like, you go with the baby. So he went with her. So the doctors are over working on her and they intubated her immediately right there. I did. And how How big is she? She was one pound, 14 ounces, 13 inches. So they have to wrap them in like cellophane is what it looks like. They didn't open for weeks. Really? Okay. So I got to see her little face, but then they were like, we have to worry about you. And so they're like scooping stuff out of me. And I know that's disgusting and graphic, but come to find out that my body was rejecting her probably this whole time. Oh my goodness. And they said that my, the umbilical cord was completely not viable. Our cells were not palatable. How did she even live that long?

SPEAKER_01 8:44

They don't know. Wow. And so, they had to see. I can't help but think that I didn't even really know you very well before that. And I had prayed for you probably more than some other people because of you being sick because that I knew that was really hard for me. That was a hard season. So that's amazing to think of that.

SPEAKER_00 9:05

God just like sustained her in

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there. Oh

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my goodness. I know that was God telling me like, you've got to get this, you know, you need to go, you need to go, you need to go. So the guilt that I carried was, I just, I constantly was like, oh, if I just hadn't, but then it was like, they told me you, both of you would have died if we hadn't taken her the day that we did. Oh my goodness. Wow. And so, I mean, my recovery was a little worse than the other ones. I was in the hospital for a week. So I didn't get to see Berklee until she was four or five days old.

SPEAKER_01 9:35

Really? Okay. Because they

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had to take care of her. Were

SPEAKER_01 9:39

you guys in the same hospital? We were, yeah. You were, okay. At this time, yeah. Right. Okay, so she's born. You are getting your, you know, feeling a little better, I'm assuming. And then what goes on with her? Like the fact that she was even alive, umbilical cord not viable. Right. I'm like shocked

SPEAKER_00 9:58

she's even made it. Well, the first, of course, my husband would go down and take videos and show me. And, you know, they put her in the little incubator. Yeah. You couldn't touch her or anything like that. But they were telling us, like, oh, she's so good for being a baby that was born so early. She's doing so good. And I remember them being like, you know, she's going to get out of here in no time. She's strong and a little fighter and so great. And so I really wasn't nervous about her. To me, preemies, because, you know, I was a preemie, were just babies that were too small. I had never, ever even thought about the illness part of a preemie, ever. Wow. until, you know, you live in the NICU for 11 months. And now I'm like, that is not what preemies are. 11 months. So all that they said about, oh, she'll go home soon. Went down the drain.

SPEAKER_01 10:46

Wow.

SPEAKER_00 10:49

Two weeks is at two weeks old. So after a about a week old. So I'd only been able to see her for a couple of days before she started to get worse. And they, you know, they did all the interventions. She had chest tubes. She had collapsed lungs. I can't even picture so tiny and all of that going on. And so surgeries to get her lungs to open and to put in tubes and wires and drains and all these things. And at two weeks, they had exhausted all the resources is what they say. She was maxed out on everything. They, you know, You know, we're at that time thinking back on it. I was so ignorant of like what to ask, who to ask, where to go, what to advocate for. You could probably write a book for other parents now, you know, and all that. Yeah. Wow. They it was a Sunday morning because my dad was preaching and I had to call him during that during his sermon. But I was they told me, you know, like, we're going to have to do a surgery. You guys stand in the hall. So they had done a surgery that day to put two more chest tubes in. So this poor little bitty baby's got four tubes coming out of her lungs and they wouldn't let me in there. And they sent the chaplain and then they sent a grief counselor. And I was like, you guys are trying to prep me like I'm not. you know, standing right here. And I was by myself because I stayed with her always. I never left her. But my husband had to go to work. We have three other kids. Somebody had to go home. And so anyway, they send all these people in to prep me and I'm like calling my mom like they're they're going to let her die. Like she's going to die. And so I remember I called my dad. I was like, stop the sermon, start praying. Like Berkeley's not going to make it. Called my husband. He was in the best place for you to call it that moment. Get instant prayer. Called my husband. So my, my mom and my husband come up and the doctor that night after she was stabilized enough to just, you know, be without, A surgeon in there. They said she's I'll never forget. This doctor said she's circling the drain and you're torturing her by keeping her alive at this point. You need to go back to your room. Get ready. We can take some pictures with her. And then if she codes tonight, we're not going to do anything to get her back. You know, like she'll pass away during the night, basically. And I remember I was just crying and crying and crying. I couldn't breathe. I couldn't, you know, I was just like, why would like at that time, of course, you're like, why God, why would I go through this for two weeks? Right. Just to not for it to end. For it to circle the drain. Right. To go down the

SPEAKER_01 13:20

drain.

SPEAKER_00 13:20

Yeah. Like what was the point of this? And so my husband and I went back to our room at the Ronald McDonald house. Both of us are crying and upset. And he finally was just like, okay. And I don't remember some things because trauma, you block out some things. But I will always remember he said, you're the one who's been with her every single day. You're the one who prays over her every day. You're the one who's faithful in this. Is he telling you that it's time to let go? Do you feel peace with that, that it's time to let her go and you need to just let him do what he wants to do? And I told him, I said, if I felt peace that it was time for her to go, I wouldn't be upset.

UNKNOWN 13:59

Wow.

SPEAKER_00 14:00

But it's not. I feel like God would give me that piece of knowing like this is she has served her purpose. Whoever she was supposed to touch, whoever her life was supposed to impact, she's done. Now let her go. I would know I'm her mother. And I was like, and like me and Jesus were tight. Like I would know he would have told me. And so he said, well, if that's the case, then don't stop your crying. Go back in that hospital and demand another surgeon, another second opinion and go fight for her. So that's exactly what I did. And the crazy thing is, is that was the last time I cried with her in the hospital.

SPEAKER_01 14:37

Oh, wow. Yeah. It almost seems like. It was a turning point in some of these trauma

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moments. But here I am bawling and squalling like he doesn't have full control over the situation.

SPEAKER_01 15:16

Wow.

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So after that, we were transferred. I called around to different hospitals. We got a hospital in St. Louis. They didn't want you there. No, we couldn't stay there. Oh, like they were like, we're we've done everything we can. Different hospitals have different traumas, you know, different things. That makes sense. And so there was a rare genetic specialist in St. Louis who said he would take her case. He was like, you know, I can't promise anything, but we'll figure out maybe what's going on. Because at this point, we still couldn't figure out like besides having chronic lung disease, like lungs that are underdeveloped. Why was she getting worse and not a little bit better or at least the same, staying the same?

SPEAKER_01 15:52

Quick question. Did they ever know why your body was rejecting her? So that happened. And so whatever was going on in her, I don't know. I only know parts of your story. So we'll get to that. But whatever was going on in her body, plus your body rejecting her, it seemed like a perfect storm almost. Like,

SPEAKER_00 16:12

talk about messy. Genetics came back perfectly fine. Really? We don't know. I mean, I know. I know that it was just God needed her testimony. Like, it's just because that had to happen.

SPEAKER_01 16:24

Wow.

SPEAKER_00 16:24

There is no, we have no reason. I will tell you her joy, like just seeing her pictures and stuff. I was like,

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I was like,

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you know, it'd be fun to have her on here, but I don't know that she'd want to sit through the whole thing.

SPEAKER_01 16:35

Maybe someday. We might be chasing her around, knock over the camera, get a close up of her. That'd be fun. But okay. So we're in the middle of, you went to another hospital and so she survived that. She didn't die in the night, that night, but she must've, God must've just kind of sustained her. Oh

SPEAKER_00 16:54

yeah. They couldn't keep caring for

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her.

SPEAKER_00 16:56

I mean, I know like some of the things that I did. We did transfer, but some of the things that I did in that hospital room and people would even comment on was like, I prayed over her. We constantly, I wasn't supposed to play music, but I would turn it down to as low as it could go, like praise music. There were verses all over the walls. Like, you know, I did my best because that's where I was finding comfort. And I was just like, God, you got to take over. But I, it was kind of like a tug of war, like take over. What can I do? Take over. No me. And so that's the story of our life. You know, now I look back on it and I can literally feel God's presence in there. Wow. I can remember sitting on the couch and it just feeling like someone's hugging me. And it's like, that was Jesus with me. Oh, my goodness. I just didn't notice it at the time. Wow. Wow. Okay. Did you have a favorite verse on the wall? I know you said you had verses, but is there a favorite thing? I did. I was surrounded and I even wrote them down. I kind of chop verses. I don't know if you do that, you know, where you kind of like take out your pieces that you need. But, you know, constantly I was telling myself, like, you know, trust in the Lord, don't lean on your own understanding. Trust in the Lord, don't lean on your own understanding. And that's Proverbs 3, 5. And then we had shirts made for Berkeley and the shirts said, be joyful in hope, patient in affliction and faith. And so that was kind of our motto

SPEAKER_01 18:30

the whole time. Like, was there any turnaround?

SPEAKER_00 18:41

Did things get worse before she began improving? They did. Yeah. When we got to St. Louis, we, of course, they were just kind of like, what are we going to do that they didn't do there? So at first, you just have tons of tons of doctors that are all just trying to figure out what's our course of action. And so we basically just let her grow until she was four and a half months old. And at that point, she's been intubated this whole time and she can't move during that time pretty much yeah I mean but not not declining right circling the dream she's maxed out on vent settings so you know it was kind of one of those things where if she gets any worse we're in trouble but we had sent off tons and tons of testing it had all come back normal so it wasn't because there's different conditions that you can't do anything for like the baby will pass away so all of those came back that it wasn't that and so at four and a half months they basically we're like, she's not getting any better, but she's still intubated and her quality of life will start declining because she's been intubated for so long. And I had been, they had thrown the word trach around just to get the trach. And at the time it was so scary. So I was like, what does it mean? Even like I've, I've heard of it. I've seen it, but I don't know what it does. So it is for oxygen. It's for, yeah. It's so that like if their airway collapses, so, you know, you've got your airway, um, Does that happen when they're intubated then? Is that why the airway collapses? No, intubated will hold their airway too because it goes straight down their throat, but they can't move their head when they're intubated because you've got a tube down your throat. Okay. I am so not a medical person. No, it's okay. And you probably need to be a doctor now after all you've gone through. Where they will cut their throat and put something in there because they can't breathe. That's when I look away. Yeah. So the trach is basically you can't lose an airway that way. Okay. Because babies like Berkeley, their airways are not hardened like ours are to where they just close on their own.

SPEAKER_01 20:42

Wow.

SPEAKER_00 20:43

So she breathed through her nose. The air wouldn't go through, but it could go through her throat. So they wanted to do a trick just so I could hold her. And get her out of bed because it's safer because it's more that whole time. I had been able to hold her, but only for like two or three minutes at a time and only a handful of times. So I was like, you know, what the heck? Just do the surgery. I mean, it can't really get worse than where we're at. And maybe that physical contact would be beneficial. Selfishly, I was like, I want to hold her and be able to at least experience my baby, especially if she may not live to get out of this hospital. And

SPEAKER_01 21:19

such a benefit to her too.

SPEAKER_00 21:20

Like it is that mother baby connection is it feeds on each other, you know. So,

SPEAKER_01 21:26

yeah. Wow.

SPEAKER_00 21:27

So that's when we decided to get and they were like, you know, it may get better and it may get worse and we don't know. And so she got her trach placed. It definitely got worse for about a month. She had to be put into a coma like her body did not. She did not like the trach. Her little lungs didn't want to work. So it definitely got hard there. But then at about six months, she. Did you ever regret that? Like if someone is going through that, were you? like, okay, or just, okay, well, we had peace about doing that. We're going to stay the course. No, I didn't regret doing the trach because if anything, at least we had gotten, she had gotten a better quality of life, gotten to get out of the bed, you know, and I'd gotten a holder. And so it wasn't, It was her lungs that didn't want to. Right. The difference in pressures. It's crazy. It's just a difference in how hard the air was coming into her lungs because the machine, the ventilator is breathing for her. Right. And so sometimes they try and fight that because it's foreign. So, OK, just a quick little thing so I can understand. So

SPEAKER_01 22:29

the ventilator breathes, but then when you have a trach, you don't need a ventilator anymore. Then it's just the

SPEAKER_00 22:34

air is going in more directly. So the trach is just the instrument to get the air into the body. So her trach is only about this long and it kind of looks like this on the end and so it just goes into her throat and it literally just goes in we don't know yet you don't know we don't know okay so some babies yes will keep the trach and be able to breathe on their own but they keep the trach in case they lose their airway gotcha okay the ventilator you don't necessarily have to have a trach to be on a ventilator. People like, like on a BiPAP or a CPAP, like those are little ventilators. They're breathing for you. Okay. So the ventilators, the machine that's breathing, the trach is the instrument letting her air get through to her lungs. And I'm focusing a little bit on the trach because I know that is a part of her daily existence. You know, it's a part of your daily life. She's on a ventilator. She's on oxygen. Okay. And she has a feeding button.

SPEAKER_01 23:28

Wow.

SPEAKER_00 23:28

Now, what does that mean? Feeding button? So she has a, um, like a little port that goes directly into her stomach and used to, that was the only way she could eat. But now she eats by mouth, which is super rare. Most kids that are tricked, they do not let things go in their mouth because she went for six months, well, nine months without having anything in her mouth. So it's so crazy. But Berkeley eats.

SPEAKER_01 23:53

Wow. So, And things don't like cross or go down the wrong tube or anything.

SPEAKER_00 23:57

I have no idea. People ask it all the time. Have you diagrammed this for me later? You have two, like your throat comes down and you have two holes. One's your airway. You know when people say it went down the wrong pipe, went down the wrong side. And you cough and choke. One goes to your lungs. One goes through to your stomach. Okay. The trach is in the hole for the lungs. So nothing can go in there. So

SPEAKER_01 24:20

that's amazing. So she eats. So fast forward. Okay. She is three.

SPEAKER_00 24:25

She's

SPEAKER_01 24:25

three. Yeah. So and but this is a chronic ongoing thing. You're dealing with all this. And there's a lot of messy from like and well, first of all, before we jump to that, is there anything else like in the messy of the NICU that you like that helped? Like when did you even get to the point she could go home? I'm getting ahead

SPEAKER_00 24:47

of myself. Well, you know, in the NICU, it was kind of survived day to day. You really have no idea when when things are going to happen. You see a lot while you're in there. And so I was always just felt like we were really blessed because, you know, I've seen lots of parents come in with a baby and leave without one. And I always just thought at least that wasn't me, you know, for today. Yeah. For today. And so you just kind of have to take it day by day whenever you have a kid who's one of those where they just don't know. So she did really well at nine months. I finally got to... get a swallow study to give her a bottle and once she was eating by mouth she got exponentially better really quick until we were able to transfer to Arkansas Children's because we were in St. Louis so we were six hours from well five hours talk about being by your other family so I couldn't see my other kids things like that so that's a whole other side to the trauma there but we were transferred to Arkansas to start getting to go home so we transferred to Arkansas and were there for a little over a month getting the Wow. Merry Christmas to you guys. Wow. So,

SPEAKER_01 26:09

okay. I, there's some different strands here. I just kind of want to ask about one is you're apart from your children during that time. How was that for your mothering heart? And then like, even I, you probably can't totally speak for your husband, but then that's more on him and probably other family and your children. Can you just kind of speak to some of that? Someone else who might be going through that, like

SPEAKER_00 26:36

your experience, but

SPEAKER_01 26:37

that,

SPEAKER_00 26:38

What do you say to someone going through that? That's hard. It's really hard. We had a lot of help, which was great because I know I met friends along the way who had no help. And I would always feel like, I don't know how you do this. So my biggest advice to someone, if you know someone going through a NICU stay, just see how you can help. A meal, a gas card. It's really expensive. One, you leave your job. So we were down a job, an income, and then I'm having to pay. I stayed in the Ronald McDonald House, which is amazing if you want to to a charity, give to that one. So that was, you know, my room, my room was covered, but I still just meals, gas, all the things. There's no home cooking. Right. You can only eat hospital food so much. And believe it or not, hospital food's more expensive usually than eating outside of the hospital. But anyway, that's a whole nother rant. I have a laundry list of things hospitals could do better. But my other kids actually ended up going and staying with my parents they live in jasper okay because they had school my husband coaches and teaches um and he had basketball so he was like they would have to be up at four and not get home till 10 every night okay and the timeline that that would have been in the

SPEAKER_01 27:52

spring and then they would have had summer and then she came home christmas so

SPEAKER_00 27:56

yeah so they went through a whole yeah like the end of a school year summer and then beginning a new school year so they finished the school year with him went through the summer and then we decided it would be better if they went to stay with my parents and then right You know, my husband would get them on the weekends or whatever. And she didn't.

SPEAKER_01 28:38

Right. And

SPEAKER_00 28:39

mom didn't come home. Then mom didn't come home.

SPEAKER_01 28:41

Right.

SPEAKER_00 28:42

And then now I have a little sister I've never met who could die and I've never met her. And I haven't seen my mom in months. And they FaceTime me and hear the beeping and they hear, you know, you don't think about those things.

SPEAKER_01 28:53

Right.

SPEAKER_00 28:54

Because I've lived in it. So the beeping of the hospital wasn't scary to me. It became your new normal. Right. But my seven-year-old, if she hears an ambulance, will immediately start crying because it's coming for her sister. You know, like just little things like that I didn't think about at the time. Wow. So my oldest was 10 at the time that Berkeley was born. So I had a 10-year-old, an 8-year-old, and then Tegan was 3? So still, like, young. She was 4. No teenager in the mix to, like, kind of maybe help. So she was 4. And so... The separation anxiety, we still deal with that with my youngest. You know, just thinking every time I leave, I may not come back. And every time I take Berkeley to the hospital to an appointment because it's happened where we go to an appointment, we don't come home for two or three weeks. Do

SPEAKER_01 29:42

you take her along sometimes just because of that?

SPEAKER_00 29:45

But that's hard because if it's a doctor's

SPEAKER_01 29:46

appointment, that's a little

SPEAKER_00 29:48

much. Hospitals are weird about who they let come in. And so I usually just tell her, like, I will come back. I will come back. I just don't know when. It's different. I try not to make promises of I'll see you tonight because I might not. And I know you had a recent hospital, John, with detour recently. So that probably, how does that go for your child who has gone through some of that? trauma, the separation? They've gotten better now, especially now that my oldest, she's 13. She's a caregiver for Berkeley. She knows how to do everything. So she has really stepped up and taken over kind of in the mothering role whenever I'm gone. And she understands all of the medical slang and she understands everything now. And so it helps because she can explain it to my younger ones, what's happening. And it's not as scary coming from big sister because she's saying it's going to be okay. So it's going to be okay. And any time that we go to the doctor or if Berkeley is sick and we have to go to the emergency room. I just tell them, you know, like we, it may be a week, it may be two weeks, but like, I'm going to come home and I'll come see you and we take breaks and my mother-in-law will come stay and I'll come home. And so they've gotten better. It's just part of it now. I mean, they just know that it's just, that's part of our life now.

SPEAKER_01 31:04

Yeah.

SPEAKER_00 31:05

And even in the mess, I think of what your husband said of, you know, he should have

SPEAKER_01 31:10

done better. But honestly, in the middle of that, you're, it is traumatic. And each of you are trying to, you know, think through, you know, pray through literally one day at a time. And so Yeah. know even and it's will you please fill in the gaps with that so you know in those moments you you kind of have to give yourself grace probably too of you know what we're doing the best we can because we What else are you supposed to do? You can't like commute back and forth. Right. Not everyone lives in a big metro area by a hospital that's going to be able to take care of. Yeah. And even I know I have a friend who they live near a major hospital, but the hospital, the children's hospital was still their home. You don't. They did not commute. It was, you know,

SPEAKER_00 32:25

home. We still have to drive her to Little Rock and people will be like, we have a hospital in Northwest. It's different. They can't they can't take her. The

SPEAKER_01 32:32

issues. Right. Right. So you still have to go. Yeah, I even one of my nephews, he had to go back to his, like states away on one of the coasts where he was born for various surgeries, you know, and even doing like dental work, he would have to go to children's and things like that. So it is when there's an issue, you kind of can't just go do the normal. So I'm a little familiar with that just because of him. But okay, so you bring her home, you got prepared to bring her like they trained you, but I'm also remembering this was all a surprise. Like you were having another pregnancy. You have three children. Everyone's healthy, fine. This time things are really different when you come home. So it sounds like it's a mini hospital in a way with it's not just okay sleeping in their nursery. Right, right.

SPEAKER_00 33:25

Well, and we had just moved into our house. We hadn't even been there a year yet. So, you know, my house is still not even put together. Wow. And so– We had just moved. We kind of moved out. And so at one point, you know, they were telling us, like, you guys are going to have to move to a place near a hospital. What happens if this happens? What happens if this happens? And so you get all these what ifs. What if our power goes out? What if we get iced in? Power because of our oxygen? Because the ventilator has to have power. You know, so my husband was like, we're going to have to move. Well, we can't afford to move. You know, so we had this whole stress of what do we do? Do we stay in our house that we like and our kids have, you know, like space to run and play? Everything's upended. Or do we have to move? to a city yeah and get new job get you a new job I mean I knew that I wouldn't be able to go back to work so while she was in the hospital I got an accounting degree wow I was like oh that's amazing I won't be able to go back to teaching so what could I do from home and do I like so I was like oh math is what I do so I'll get an accounting degree and I'll be an accountant from home you know what I love that that's thriving in the mess right there you're in the NICU getting a degree in accounting wow so I was like I'll have to work from home but you know he can't leave his job. Yeah. You go home and you think in your mind, we're going to get to, we get to go home and it's going to be fine. No, you get to go home. And now you live with a nurse in your house, you know, new people in my house all the time, which praise the Lord. We have had really great nurses that are a part of our family. But you still have someone new in your house, knowing all your business. And how can you keep it normal for your other kids? Because this is their childhood that now is marred by medical stuff. Yeah. You know, it's crazy things. Like I had to make sure that our backfield, a helicopter could land in it. So we had to call Aerovac, make sure they can land out there, make sure that the lines are not too close. Oh, wow. This sounds like a movie set.

SPEAKER_01 35:35

And things are, you know, I even think of when we brought our babies home, it was like, you feel a little like, okay, we're like, it's just us now. They let me take this baby home. Now what do I do? We're in charge of like, you know, things, you know, and that's a lot. But then to have all like the medical things to deal with. So, but today then, you're

SPEAKER_00 36:02

every day. What does that look like? Because I'm sure you have to keep, you know, things clean. Like, do you have to clean a tree? I have no idea. You do. And so when she first came home, I had, of course, talked to multiple parents in the same situation. A lot of parents that I talked to, that was their only child. So I had to think of how am I going to... protect my medically chronically ill child but not take away from the childhood of my other kids

SPEAKER_01 36:30

right

SPEAKER_00 36:31

I'm not going to be able to homeschool all of them because there's I mean it's a full-time job taking care of Berkeley I can't homeschool them but they go to public school like I'm not going to make them not play on sports teams or not go to their friends houses you know things like that so I had to really think about my husband and I had to talk about like are we going to let visitors come over yeah I have a huge family I'm not going to not have people come over so I am probably one of I don't know that I'm a great example. Well, I am a good example, but I am not one of those like neat freak, clean freak. I treat Berkeley just like any other child. Wow. To an extent, obviously. Right, right, right. But I just was like, we're going to have common sense. You know, we're going to wash our hands. If you're sick, you're not going to be around her. If you're sick, you can't come over. Like things like that. Right, right. And so that's kind of how we chose to run it at our house. Yeah. So even today, I treat Berkeley just like any other three-year-old. She just has extra accessories is what we always say. I love that. It's like a Barbie doll. American Girl doll with accessories. It's not like most little kids where I could transition her to a toddler bed. I mean, I am about to transition her once I get a bed. But it's just, you know, you have to think about because she has a station set up in our living room. for all of her stuff and then she has a station in her bedroom for all of her stuff um and so like all her medical stuff you're saying just okay so you know her closet isn't cute and full of cute clothes it's like medical equipment and boxes and stacks of supplies and then there's clothes all the way in the back is there anything pink you like paint the medical equipment like something so you can't access medical equipment yes

SPEAKER_01 38:03

you know

SPEAKER_00 38:03

um but she doesn't know any different right one thing about it is her normal you know i get the comment a lot like how could you do that to her and make Right, right. in their button that's her normal because she she thinks you're weird yeah you know like if they think it's weird for her she thinks you're weird like why do you not have the things i have right right um my husband actually did modeling as a child oh really they lived well

SPEAKER_01 38:42

they all did their whole family did so he just was like well everyone does he goes to kindergarten it's like everyone's a model yeah you know so i totally get that that that's her normal and she doesn't know any different and i know one of my friends um told me uh Her daughter is in a wheelchair and she's like– it's like being left-handed. You don't view it as– it's just– but– well, we'll get to something else. We'll talk about like how people– Do they talk to you like when there's someone other than saying, are they you know, why is she on a leash and things? But OK, so your day today is

SPEAKER_00 39:21

does she wake up in the night? What do you do? We're very routine. That's one thing about her. As far as she goes, she's still the only thing she has wrong with her is her lungs. It's very rare that a kid who's been on oxygen their whole life, who went through periods of being, you know, in a medically induced coma and things don't have other deficits. Brain, heart. Really? Really? All of that. So she has no other deficit. She's very, you know, like if you're going to if you approach her and you have anything that looks like a needle, you know, she's going to like immediately walk away from you. Like things like that. Like the things, you know, she can't lay on a flat surface, a hard surface. She's scared of hard surfaces. You know, like it's weird little things like that. Interesting. But outside of that, she's completely normal. But we all have idiosyncrasies like that. Yeah. She runs. She jumps. She eats. She plays. She jokes. She laughs. She sings. You know, she does all the things. She looks like she has such joy. she is she's never I'm not gonna say that she does throw fits now but she's never felt sorry for herself she's never acted like a sick kid is what I always say like she's the happiest sick kid you'll ever meet like she doesn't ever let it slow her down but a lot of that comes from you guys as parents I feel like too

SPEAKER_01 40:50

of just because our children take our cues from us as parents when we're walking through a crisis or trauma so how beautiful that she doesn't

SPEAKER_00 41:00

view

SPEAKER_01 41:00

herself that way.

SPEAKER_00 41:00

Well, I don't let people treat her any different either. Like, you're not going to treat my child like a sick kid. Wow. Because I always say, like, she's not sick. She's just different. Yeah. You know? Yeah. I like

SPEAKER_01 41:10

that there are limitations, but you're not letting the limitations... Limit you.

SPEAKER_00 41:16

No, we'll figure out a way to make it work. Yeah, we'll figure out a way to let it happen. And something a little, probably a little controversial in some ways.

SPEAKER_01 41:26

You have let her go, well, not swimming, but be in the

SPEAKER_00 41:29

water. I have, yes. And so like a little pool. So we have a pool at our house. All my kids, we're big water people. And so she, of course, if water gets in her trach, she'll drown and die. Like it's, it's a very dangerous, very Right, right. has her trach, which is still open access to her lungs. I was picturing her sprinting to the pool. No, no, no, no, no. It's called a sprint because it's basically her lungs getting to work on their own. Gotcha. Kind of like a sprint, like a sprinter would. I was picturing her running to the pool like, oh no. She will do that. But I've also taught Berkeley, she knows what it means to die. And she'll say they died. Like, you know, if it's a movie or something, like she's three and she knows what death is. So I told her if you get in that water without mommy or daddy, you will die. Because she will, you know. So she knows and she'll tell you, can't go in the water, I die. And so she waits. We put on her little life jacket. And a couple of weekends ago, I think it was her first time to get in there and I bought her this raft. And so my husband put her in the raft with her little life jacket on and rode her around on the waves, you know, and let her splash her feet and stuff. So she can't get in past her, you know, her belly button. And obviously without someone holding her, but she loves it. Wow. Every day she wants to go swim.

SPEAKER_01 43:14

You know, I think it's beautiful that you, again, are finding ways to let her love life and enjoy life and not feel like she's sick, you know, that she has limitation. And which she does. She may not feel that more as she's older. But honestly, you're just letting her, you know, do the things. So this sprint thing, how long can she be off the ventilator?

SPEAKER_00 43:40

Well, right now... It really depends. We had worked up to three hours and then she got sick and went back down to not being able to get off at all. So every time she gets sick, it kind of lungs are like a long game. You run and you fall down the hill. You run and you fall down the hill. So right now, knock on wood, she's up to about three hours most days. It just depends. So in other ways, does she have like a ventilator in her bedroom then for sleeping and then one in the living room where she plays? No, we move it with her. You just move it with her. So I have one that's connected to a pole that stays at home and I have one that I can carry with me like to the car and

SPEAKER_01 44:14

stuff right okay yeah no it just moves with her okay so what would you tell someone I want to jump back to Nick you what would you tell a mom there I'm going to start with a mom but also if you can touch on like a dad because sometimes one of them can be there sometimes it's the dad sometimes it's the mom sometimes you know neither of them can be there sometimes both of them can be there sometimes you know Right. Right.

SPEAKER_00 45:12

are single dads you know maybe mom's not even around so you just never know and so whatever the situation is I think that grace is a big deal you have to just give yourself grace like those doctors and nurses are there they'll they'll do their job and keep that baby alive I know I always felt so guilty leaving the hospital but it's so important to leave the hospital yeah probably just for your mental well-being exactly right right and then like to go you know I always felt like I felt guilty to leave Berkeley to go visit the kids because what if something happened while I was gone? But then I felt guilty not going and visiting my other kids because they need mom too. So I think that it's just really important to talk if you are as a couple and figure out what is a game plan that we can do. Right. Right. Right. And split up and divide and conquer is what we had to do. Because life keeps going, like you said. Because you do still have life going on. Yeah. And you have to prioritize yourself, too. I mean, you know, it's hard to focus. How do you do that in the middle of

SPEAKER_02 46:36

that?

SPEAKER_00 46:38

One thing I did do while I was in the NICU is I got a routine going. And for me, that helped me get up in the mornings because chronic stress, really, it's real. It really is something that will just tear you down. So finding that routine. And then if you're sitting in a NICU like, you know, like I was and going to be there a long time, hobbies, reading. Yeah. I, you know, I made bracelets. I wrote in a journal. I read books. I did all kinds of things to keep myself busy throughout the day. And one thing that I did do while I was there is I found a spa that had a monthly like membership and I would go, I would make myself go get a massage once a month. Good for you. And it was just something silly, you know, but it's just one of those things because it got you out of the hospital and you got to forget where you were at for an hour.

SPEAKER_01 47:29

Yeah.

UNKNOWN 47:30

Yeah.

SPEAKER_01 47:30

And

SPEAKER_00 47:30

then you can go back. And you

SPEAKER_01 47:31

don't hear the beeping

SPEAKER_00 47:33

machines like you

SPEAKER_01 47:33

talked

SPEAKER_00 47:34

about.

SPEAKER_01 47:34

Exactly. It's just even if you make it homey in a way there's still like the verses and the things

SPEAKER_00 47:42

it it still is more sterile it's a hospital it's a hospital you know and you're a guest in that hospital like that's your child but you're a guest right so it's hard to be like i make no calls here you know like i can one thing i always tell everyone is like doctors you're allowed to ask questions and you're allowed to get a second opinion. I think one of the things I didn't realize when I went in was that the doctor's word is not the final word necessarily. But in a sense, they can kick you out of there. They can make you leave. So it's really nerve-wracking to be like, when do I speak up? When do I not speak up? When do I do something? When do I not do something? What do you do with that? How do you advocate or not? You learn. I spend a lot of time asking questions to my nurses. You really form relationships with your nurses They're in there all day with you. And I got to where, you know, I'd ask questions. I'd say, if this was your baby, what would you ask? Right, right. Knowing what you know, what questions should I be asking? I wrote it down. I mean, I have notebooks of things. And, you know, I would ask just so I knew. And I would write the answers down because I was in such a spot that if you told me something, I would not remember it later. So I literally had to write everything down.

SPEAKER_01 48:53

Right,

SPEAKER_00 48:54

right. But I just, I learned. I asked questions. I found people who had walked in that. Like I said, some of my friends now that I talk to all the time are NICU moms that I met because I searched them up on Facebook. Wow. So community

SPEAKER_01 49:10

is a

SPEAKER_00 49:10

big part of you walking through this, other people in this capacity. There's not one path that's going to be the same. You can't judge yours based off someone else's. But it really helps to know, like, well, this could happen. Or here's how they handled this if this comes up. Or I have one of my friends. She was the very first NICU mom that I kind of talked to. And our stories were very similar. Even to this day, I'll be like, OK, here's what happened. Am I being crazy or should I, like, call the emergency room? Oh, right. You know, and she'll be like, oh, just do this. And that should help it, you know. And they're decanulated. Like, her baby or her, he's five. He's not a baby. But they're decanulated. Like, she's been through the whole thing. No. What does that mean? His trachs out. Oh, decannulated. That's a lot of syllables for

SPEAKER_02 49:56

me.

SPEAKER_00 49:57

But, you know, like she's just, that's our friendship. It's just a trach mom friendship and we follow each other. How amazing. You have to find people. Nowadays, through social media, you're able to

SPEAKER_01 50:07

connect with groups and there's so much online even. I don't know how people would have done it before. A lot of people hate social media, but I think it's a beautiful thing. But that's a plus thing for, wow. So community. Community is important with even the after. Did you have community other than the nurses while you were there? Did you begin to have community with other people there? Was it hard to reach out? Because everyone's

SPEAKER_00 50:33

in survival mode, I would think, their other parents. In the part of the hospital that I was in, It was very isolated. You're in isolation a lot. And so you really couldn't go. I remember there was one mom down the hall and like once Berkeley could get out of bed, like we would poke their heads out of their rooms so they could be like, hi, you know, but like I didn't. And as sad as it is, I didn't want to talk to and get close to. I did have a couple of moms that I did become really good friends with there. That is important. But it's also very hard to get close to people because you never know how long they're going to be there. Right. So I did have friends that were there. and it was awful when they left but you know you'll find I feel like God sends the people you need because I can't even tell you how I met the friends that I had while I was there we weren't even in the same like NICU pod

SPEAKER_01 51:22

yeah

SPEAKER_00 51:22

but pod that seems even more isolated in

SPEAKER_01 51:26

a way yeah

SPEAKER_00 51:26

well with other

SPEAKER_01 51:27

people I guess because a lot of times that's one of the things I say with walking through a mess you're not alone there are other people who have walked through mess and but a moment like that sure feels like you are because you're Not with your other children. You're with a helpless baby and medical people and not with your husband, not with other family, not with your students anymore teaching. And that world can probably feel very small, you know. And so I love the tangibles you're giving of like you found a place you could get a massage. You could, you know, find some other community, get your accounting degree. Like that's my thing. I'm just like, wow, you know, because it takes emotional bandwidth to even walk through caring. Like even when I'm sick, like it takes a little more emotional bandwidth that we have to take care of ourselves. And then if a child is, you know, and to have that be crisis mode for a lot of that time is that's a lot. Did you ever feel like you were going to lose her as time went on

SPEAKER_00 52:37

more? And do you ever feel like that now? Yeah. Yeah. It's that's why she has to have a nurse 24 hours a day. She has to have open eyes on her all the time. So it's a lot. But we just choose not to think about that. You know, you can't dwell on all the things. That's good. So I don't walk around looking at all the things that could go wrong because I trust that God's got that. Like when I handed his situation and that's one of the things I really wanted to speak about is that there was a point where I had to say, OK, God, it was kind of like it made me think of like Abraham and Isaac, you know, just. You are in control. You're going to provide here. And I remember praying like if her story was meant to touch people only in this hospital and the people that I've talked to and come into contact with and through social media, if that's all this was for. You're a good God. And I'm so glad I got to be a part of it.

SPEAKER_01 53:55

Wow. And real quick, the Abraham and Isaac story, just to touch on that, if no one's familiar with that, it's literally God had prompted Abraham, go up to this mountain, take Isaac with you. And Abraham knew he... He was going to sacrifice him.

SPEAKER_00 54:41

Right. Right. And so I prayed that all the time. And I still do. I mean, there's days where people are like, she's normal now. And I'm like, no, she's not like, she looks normal, but she's really not, you know, and, and every time that we're admitted to the hospital, you know, you just never know what could go wrong. So I try and take every day as like, Berkeley's here because she's a miracle. Like, I've had multiple doctors tell me there's no way she should be alive. No way. Can't explain it. And I'd always say I can. And you know, they can't talk about it. But I've had doctors that are like you're right you know like and then you have your doctors that are like oh i don't believe in all that but now i'd be like well you explain it then and you know and they're like well i can't well i can't um god kept her around for a reason and um even to my other kids i've told them she could live to be 100 years old right she could get this trach out and this will be a distant memory someday that we'll think about when she'll be at all your funerals yeah like where she'll be running and playing basketball and whatever um or she could have a Right, right. It just seems like it's a little more likely. And so I'm just, like I said, I just always pray that God will make sure my heart's ready because I'm going to have three other kids to minister to. I'm going to have a husband to minister to. I don't want to be the hindrance. So use me. How you're supposed to as her mom.

SPEAKER_01 56:52

Yeah.

SPEAKER_00 56:52

Teach me how to teach them how to, you know, just be prepared because when you're living with a miracle, like God can use it and then he can also take it. So we have to be ready. And we're not promised tomorrow. I probably I say

SPEAKER_01 57:06

that a lot in regards to when my mom passed away several years ago that literally my oldest graduate from high school and she was there and celebrating and all the things gone the next day of sudden heart attack. So we're literally not promised tomorrow, but we can choose to live in today. And I love how you're doing that, you know, just on so many levels. And we just treasure those moments. So I love that. You know, I can't help but think of there's a verse in Isaiah. After my mom passed away, I was really ready for my oldest to go to college. He was ready. And I was good with that. Like every parent, we have to have that release, whether it's in the NICU. Or when they go to cut, you know, we we kind of have to get to that moment. And how are we going to handle it? And I was I was like, oh, this is great. You know, your child's ready and things. But then there was my mom died and I didn't want anyone to leave. I wanted all my people kind of close by. And God had to kind of there's a verse in Isaiah and it basically is saying, the Lord goes before you. The God of Israel is your rear guard. And I'm like, oh. OK, the God of Israel. Let's see, Lisa, what did he do? Oh, let's see. He parted seas for his people to walk through. He did. He provided food in the wilderness, you know, with manna, like daily food. And, you know, just OK, God, can I trust you with my child? And I hear you saying that, too. Can I trust you? And the Lord goes before you. My son, you know, I literally and it literally was that moment where I'm like, OK, I'm OK with this because I really wasn't. I was and I wasn't. I'm like, I can't, you know, and he was going to go off to another state and all for college. And you went through that. And I love that the Lord goes before your daughter. The God of Israel is her rear guard, you know, so we're surrounded. We're protected. You know, God's pretty powerful. And but we always think we're the one who can do all the things like, you know, I always am. Like, oh, wouldn't it be better to have our child just in their living room when they're nice and safe, everything's childproof, they can't stick their finger in the plug and all that. But we either trust God or we don't with

SPEAKER_00 59:33

our child. As a believer, I know that she's not mine. This child is not mine. I was trusted to raise her. I was trusted to... advocate for her and to teach her. But ultimately, none of my children are mine. So I have to remind myself of that sometimes. It's like, thank you, Lord, for giving them to me while they're here on earth. Thank you for trusting me with them. But don't let me mess them up. And you're ultimately in control. They're your children, just like I'm your child. And so it's hard. And I think that one of the biggest things with Berkeley, a lot of people say, well, if you knew she was going to turn out like this, would you have aborted her? Or Would you have not done it? You know, would you have let her go whenever the doctor told you to? And absolutely not. Like it uprooted my life. My life is completely different. Never would have ever imagined that I would be here. But my life has my faith mostly grew exponentially. I mean, when I say I could feel Jesus and feel God's presence, I think we were talking about that before we started recording. But like sitting there with me, like it's true to the point where I'm like he became less of a person I've prayed to and and read about and believed in because I felt the Holy Spirit move before to a like physical person. I just can't see him, but I can feel him like he became so real to me during this walk with Berkeley. And I wouldn't take I wouldn't give it back. for nothing. I mean, even if, you know, the Lord calls her home and this was all for nothing, if some people would say, this has been the best experience of my life.

SPEAKER_01 1:01:11

Oh, my

SPEAKER_00 1:01:11

goodness. So she has such joy. She does. She's contagious. Yes. It's like she is the light of the room. Wow. Isn't that amazing? And she almost

SPEAKER_01 1:01:23

didn't make it. And I think at one point, we've already touched on like if your child might not make it. You had mentioned something about in your journal where you kept different things. And one day you said, you know, today you almost died or something like

SPEAKER_00 1:01:41

that. She did. We had a day where... After she got her trach placed and she was having trouble like her body adjusting before they put her into the medically induced coma, she just kept coding and kept coding. And so they would have to take her off and bag her. And so, you know, if you watch medical dramas, then, you know, that's where they like, you know. do the little bagging for air. Basically what that does is it will pop your lungs open really fast. And so like it makes your lungs open and then do CPR. And so of course her little body, I mean, at two months old, I was reading through this journal earlier and I think at two months old, I was, I put in here like, you finally weigh two pounds, like, you know, and she's two months old. And so she wasn't very big and you're sitting there doing CPR with two fingers on a little baby. And she coded So much that the doctor and the nurses just pulled chairs into her room and we just all sat in there and we stayed all night long. And I remember that next day they were like, we're going to put her into a coma, let her body rest. And so then that's even worse because you have this baby who's literally looks like a little dead baby. I mean, they're in a coma. And for them. And you're alone too. Yeah. And so you don't know if because they're on a ventilator, they're on life support. She lives on life support. That's the gravity of the situation. So you have no idea. Is she alive or dead? Because she's on life support. You know, I but that was one of the things I wrote in here was, you know, I wrote a journal for her so she could look back and read it someday what all she went through. And so sometimes I would kind of joke and like you were a real punk today or, you know, whatever. One day there's in there's like you pooped on a nurse today and it was hilarious. But on that day, literally all it says is you tried to die today.

SPEAKER_01 1:03:18

Wow.

SPEAKER_00 1:03:19

And I mean, I'm sure at that point I was like, I can't even like elaborate on it because I'm so exhausted. So I didn't. It just that's all it says. It's so morbid. You can tell that. the emotional bandwidth again. Yeah. Okay. I've had it, but I want you to know this. I didn't elaborate. I just, you tried to die today. And some of those things sounds like you can read them at her wedding. Yeah. Yeah. Well, I haven't read through it. I mentioned that to you earlier. I grabbed it today to bring with me, but I haven't read through it. And so I'm like, I need to, because I, I have a question. I love to

SPEAKER_01 1:03:49

look for God sightings

SPEAKER_00 1:03:51

in the

SPEAKER_01 1:03:51

middle of challenging times or just even our everyday. It doesn't even have to be challenging. Do you have a particular... God sighting, like where God just shows up and you're just like, wow, in the middle of it. It can be I've literally had someone after my mom died, bring offered to bring me my favorite Sonic drink, you know, and while I was writing her obituary, that was a God sighting that day, you know, and but do you have a favorite one or two that you're like? This is where I really, like you've talked about where you felt like God literally was next to you in the room, but are there other moments either in the hospital or since or even now, even your recent hospital stay, just

SPEAKER_00 1:04:31

anything that really jumps out like, wow, God. I'm sure there's a lot that I just would have to really think about. But the first thing that came to mind when you said that is we had a nurse that she didn't, she had not been working in the NICU or something and she just happened to like come back to the NICU but for whatever that reason was but she ended up being when she first came in she was so cranky and they would walk in and I'd be like nope like we're not gonna jive you know like and she was the one that I was like man she's hateful and you know I'm already in a bad mood so I'm like and I don't remember that she was ever hateful to me but she just looked hateful you know and I was like okay I don't need that kind of negativity around me and so I remember the first couple of times she was super dry and I have a Very dry sense of humor. But like when I'm in a bad mood, it's like poking a bear. Dryer, dryer. Where I'm like, what did you just say to me? And so I remember like we didn't really get along the first couple of times. But then over whatever time being, she ended up being like. Like my family in the hospital. She stayed with Berkeley. She took extra shifts. If she knew that a certain like, you know, if if a doctor was going to be off or if she thought that they might turn the ventilator, you know, like they might do something wrong. Or if Berkeley was really, really sick, she would take extra shifts and stay with her so that I could go sleep. She was an angel. Absolute angel. I know she was. And she, like I said, was like family. She would bring me food. She would, you know, come on her days off to sit and make sure that I got out and like walk target or did something else besides sit in there. And even like, you know, after we left the hospital, we stayed in contact and she was definitely someone that I know God was like, stop being stubborn. Like I'm sending her to you. And I hope that she can look back on that and be like, she, you know, it was a mutual touching experience. But she was definitely someone that I was like, God, he put you here because he knew that I needed someone on my side. He didn't think that at the first moment. No, I didn't. It was very, very unlikely. Least likely heroes in our lives. But we had so many. I mean, the whole time we had people who helped us with so many things. You know, money is always a stressor when you're a medical family. Well,

SPEAKER_01 1:06:52

that's what I'm wondering. I know earlier you mentioned, how do you reach out and encourage

SPEAKER_00 1:06:58

someone in that moment? Like you mentioned gift cards or you you know, different kinds of things. Money, I would say, is like, besides just the... the illness, money is the biggest stressor. And I know right now it's probably the biggest stressor for everyone, but you wonder like, but you were down and in, you know, you, well, and just the cost of keeping her alive every day. I mean, it's crazy. Um, and I just, you just, God will provide, you just have to keep that in mind. And that's still something we stress about to this day. You know, my husband and I, we still are like, what are we going to do? Um, and you just gotta do what you can do, you know?

UNKNOWN 1:07:31

Um,

SPEAKER_00 1:07:31

If you're looking to help someone who's in the NICU, if they're like me, I hate asking for help. I would never admit to needing help. Right, right. they're not going to say it. Yeah. But you know, like getting the random, I would have friends text me and be like, I Venmo you 10 bucks for coffee, go get a coffee, you know, and that would just be such a, like a uplifting thing or mail me a book or cause Amazon will ship to a hospital. Like people don't know that it's like you can ship to a hospital to a patient, um, you know, send them a care package or a meal, um, the grub hub cards or door dash cards, you know, things like that. It doesn't have to be big and And I think that that's a thing is you feel like when you're going to help someone, you're like, I don't have$100 or$200 or whatever to help.$5 is a coffee. And it brightens their day. It's just nice to be like, I wasn't going to get a coffee because I can't waste money like that. But now that someone sent it to me, I can go to Starbucks. Because I'm not wasting it. And that's a lot of

SPEAKER_01 1:08:35

days that can be brightened because you're

SPEAKER_00 1:08:37

in there for days, weeks, and months. My DoorDash card never ran out. Wow. Wow. And so loved. And it just helps to have other people come in. Yes, at the same time. But it's like you feel so unworthy of other people. And I would say that all the time. Other people have it so much worse than we do. Wow. Wow. I don't, I can't, I can't accept the help. Like other people have it so much worse than we do. And that's a pride thing sometimes to just let people step in. Finally, I don't know who told me that, but it was like, don't rob people of the blessing. Right. And so now I always tell myself, don't rob people of the blessing. Like, you know.

SPEAKER_01 1:09:37

Yeah. I've had moments like that too. And that is, you know, allowing someone to step in and help carry the load. And what, you've touched a little on this with some people. People who are like, okay, well, you wouldn't have to have the medical cost. You would still be having two incomes. She's attached all the time. Any final thoughts on that?

UNKNOWN 1:10:10

Yeah.

SPEAKER_00 1:10:10

I mean, I think that for other people, especially in the beginning, my other kids would be like, people are staring. People are staring. And little kids, I love it. Little kids have no filter. And they'll say, what is that? You know, like, what's wrong with her? And I always laugh. And I'm like, well, yeah. And they're like, don't, don't. And I'm like, it's okay. Like, let them ask. Because to Berkeley, if you're telling, if you're shushing your child, she's like, what's wrong with me? Right. You know, that they can't talk to me. So I'm always like, let them ask. And even adults ask me. I don't care. Yeah. Right. Right. Right, right. The funny thing is, is like it's not contagious because I've had parents be like, don't go over there. You'll catch whatever she has, you know, and it's like she doesn't have a disease you're going to catch. Right. You're not going to hurt her if you come play with her. Like kids on the playground are always afraid to play with her. Right. You know, like and I'll say, oh, you can play with her. You know, she's just a regular kid. It's just I know this is a scary tube. Right. So we just, you know, I don't ever want her to think something's wrong with her because she's perfect the way that she is. Right, right. And I also want to encourage other people to know, like, you can ask questions. And most medical parents that I've come into contact with are completely okay with you asking questions.

SPEAKER_01 1:12:43

Right.

SPEAKER_00 1:12:44

The thing that is really hard is when it's you're passing judgment on something you don't know anything about. Right. Oh, that's a good point. You know, like, don't tell me how to take care of my kid when you've never been in my shoes.

UNKNOWN 1:12:55

Right.

SPEAKER_00 1:12:56

I know it's hard. Right. She's not attached to a leash. She's not a dog. Like, you know, like... Right, right. I'll joke and say, oh, well... I love your sense of humor with that, though. Her cord's only four foot long, you know, but... It's like it's one thing when I'm joking about it, but don't call my child a dog. Right. You know, just little things like that where I have really thick skin. You know, I'm the oldest of nine kids. Like you cannot hurt my feelings. But some parents are very not as they don't have my sense of humor. I do have a dry sense of humor and I'll give it and I can take it. But that's how I do not do this. Yes. So that's just like like comments on social media and things like that. You know, like it doesn't bother me at all, but it does raise awareness to the fact that it's just ignorance

SPEAKER_02 1:13:40

a

SPEAKER_00 1:13:41

lot of times people just don't know and for some reason humanity that's our flaw when we don't know we instantly go negative we don't go positive we instantly go negative or we back up like

SPEAKER_01 1:13:51

I love what you were saying I love that you touched on this because that was my other question of what do you tell someone who you know anything that's unknown or different where like we back up a little bit and that's a lot of people with chronic illness Or a disability of some kind or anything like that. It's like, well, we don't know what to say. And so I love that a child is like, children are

SPEAKER_00 1:14:19

like, oh, what is that? Just right out there. Yeah. Or they'll be like, what's that noise? You know, and it's like, oh, that's the machine. And yeah. And so

SPEAKER_01 1:14:34

I love it. Tell, you know, that parent of, hey, don't be afraid of us. Don't be afraid of my child.

SPEAKER_00 1:14:43

I don't know. What would you say? You know, just to encourage your children to be inclusive of all kids, you know, like have them go say, hey, do you want to play? Because as the parent, if she can't, I'm going to say, oh, my gosh, thank you for asking. But she can't. Right. You know, but if you never let your kid if my kid plays on a playground for an hour and you don't ever let you know, I can tell they want to come play, but you're not letting them, you know, that's teaching your child not to be inclusive. Wow. Wow. Yeah. just from my perspective, if I didn't want people to ask me questions about her, I wouldn't go out. Right. I would keep her at home. Stay at home. So I am okay. I'm opening the door for the questions by bringing her in public. And so I don't know if that's how all parents with, you know, a child who might be disabled or ill or whatever. And it's different for every family, like you said. Right. But parents are pretty good to be like, you're going to know if they don't want you over there. You know, just common sense will tell you like, we should back up. But in her case, I mean, my biggest goal is to raise her to know that like she's perfect the way god made her and she's worthy of everything everybody else is worthy of

SPEAKER_01 1:15:55

yeah um wow so oh that's powerful any final thoughts on how you've seen god show up through all this and there there's a lot lot of layers of time alone Trusting, like you've already talked about, like being willing to knowing she might die any moment, any day, even now and walking through that. But is there anything you would encourage someone just of, you know, how you've looked to God through all this? And I'm sure there are some people who are like, well, I don't have faith. I don't need that. But what would you say to, you know, anyone walking through that with faith or without faith?

SPEAKER_00 1:16:41

Well, you saying like that, there are also people who could go the other way of like, why would God let this happen?

SPEAKER_01 1:16:47

Right.

SPEAKER_00 1:16:49

And so to those people, I think it's really important to remember that like God uses everything that happens for good.

UNKNOWN 1:16:57

Right.

SPEAKER_00 1:16:57

You know, there is so much goods that's come from Berkeley that never would have happened without her. And so it's at the time, I can't say that I was thinking, oh, this is great. I'm so joyful in the blessings that are coming. No, I probably didn't think that. But just remember that like. God's got your back and you're being tested. If you are someone who has faith, you're being tested for something bigger. You know, when you think back to the Bible stories and then even now I can be reading a story and I'm like, gosh, this is such a little bitty trial compared to, you know, whatever. But then without faith, I always felt so sad because you can see the people who have no hope in the situation. And I mean, I don't know how to relate to that because I've had hope this whole time. I was never desolate or, you know, depressed. But I would just say if you don't, if you won't lean on God, even though I know he's got you, you might not trust him, but he's got you. Lean on someone. Find someone who you love who maybe does have the faith

SPEAKER_02 1:18:09

to

SPEAKER_00 1:18:10

give you and let them hold you up. You know, just don't try and do it alone. I know that God can use anybody to reach anybody. So even the most stubborn of people, he's going to find someone to reach out to you. So... I mean, I think the best advice I could give if you're someone who's like, ah, I'm not going to depend on a God who would put me through this in the first place, then find someone you can depend on and let them help you. Just don't try and do it by yourself.

SPEAKER_01 1:18:45

Right.

SPEAKER_00 1:18:46

Oh, that's good. And you also have talked about just so

SPEAKER_01 1:18:49

many things to do, like intentionally look for community. Intentionally, you looked for another income source and literally studied, you know, to be able to

SPEAKER_00 1:19:02

get another degree. Yeah. Keeping busy is important. Depression is hard to catch when you're running. You know, I ran from it. I ran from it because... I, you know, it would have been real easy to get depressed and lay in a bed all day and cry and feel sorry for myself. And you could have done that in the hospital room with her. So just, you know, practical tips aside from being any faith based anything would just be number one, get educated. Doctors are going to talk over your head. And so I rented a textbook, a NICU nursing textbook, and I learned what the words meant. And they learned real fast. You won't talk over my head like you're not going to use big, fancy words. Yeah. go to rounds in the mornings. That's when the doctors will come around and talk about each patient in a place like an ICU. And so they'll talk about the day, what they're going to do, take notes, ask questions. If you don't know what questions to ask, find someone who's been there and ask them what questions to ask. So it's just like you can't just sit there all day. The days are long. The days are long and they're not very eventful in most cases. And so just Being educated on your situation, what you can ask, what you can't. Find community. Use social media. Use, you know, the hospitals have resources for you to reach out to people. Most of the time, ask a social worker what resources they have. Ask what your hospital has. Do they have a food program that you can use? Some do. Some don't. That helps cover the food cost. Yes. Some have gas programs. Wow. But you won't know if you don't ask. And so... you know, just asking what resources are available. Yeah. Wow. This is also good. Uh, yeah. Staying busy, getting hobbies, find something that you'd like to do. Teach yourself to crochet, teach yourself to knit color and a color. Sometimes I would just color cause it's a mindless thing to do, but it kept me busy.

SPEAKER_02 1:20:55

Right.

SPEAKER_00 1:20:55

Um, one thing I didn't do that I wish looking back on, I'm like, I should have done that was like exercise, you know, that would have helped me so much to get outside and exercise. But sometimes it was just all I could do to just go sit in the sunlight. Um, But I never did exercise. I don't know why. I mean, I was in St. Louis, so I wasn't like I was going to walk too far. But, you know, just finding ways to get outside and exercise and take care of yourself, you know, drink water and make sure you're eating. Like there was days where I'd be like, did I eat today? I have no idea. Like make sure you're not physically making yourself ill.

SPEAKER_01 1:21:29

Right, right. Wow. Yeah. These are some amazing. Those are my tips. Takeaways. Oh, my goodness. Hasten, this has been so I just feel like it's helped me even know more of. you know, getting a glimpse on when there is a chronic illness and just all the things that go along with it, you know, medically and emotionally and just all the different strands with it. Your children, you talked about you and your husband not being like around each other very much for almost a year. And, you know, there's just a lot of strands with it and just some of the words of hope you gave us from the Bible. And I just, I really thank you for being Being so open and sharing all this. Any final words for anybody? That was a lot. That was great.

SPEAKER_00 1:22:16

Yes. Well, thank you for having me. I love to share and spread awareness. And that's what I hope to do through my social medias is, you know, encourage people that might be going through this. And

SPEAKER_01 1:22:27

you do. I

SPEAKER_00 1:22:28

love. I just feel like even your pictures, I feel

SPEAKER_01 1:22:32

like your daughter's giving me joy just seeing her joy and her smile. And every child is mischievous and has, you know, their things. They're spunky. She

SPEAKER_00 1:22:42

is. Well, those little babies, they're just a they're a different kind of spunk. They really are what they have to be. They do. They have to survive. Wow. And they're just so fun. Wow. They're so sweet. Wow. Final words would just be, you know, what if you're just starting a trial or if you're in the middle of it and you're like, when is this ever going to end? It will end. It could seem really long. I mean, that was like the longest year of my life. But now it seems like it was so long ago. And And so, you know, the trial doesn't last forever

SPEAKER_01 1:23:14

and

SPEAKER_00 1:23:15

it will get better.

SPEAKER_01 1:23:16

Wow.

SPEAKER_00 1:23:18

Whether it's how you want it or not, it will get better. Right. So I just think just take it a day at a time. Just take it one day at a time. Just do one thing today. If it's taking a shower, take the shower. Right, right. And then tomorrow maybe you'll take a shower and eat a snack. Like, you know, like just do one thing. Just get up with one goal. Don't try and do everything in one day. Don't try and run the whole race. Right. Just one day at a time, one thing at a time. That's good for everybody. And I know as a mom, it's bad to be like, well, I have to do all of the things. Well, when you're in something like that, today may just be you have to get up, you have to take a shower, you have to go to the hospital. That's it. And that's all your brain can handle. And just be okay with that.

SPEAKER_01 1:23:58

Yeah.

SPEAKER_00 1:23:59

So that's great for any stage

SPEAKER_01 1:24:01

of life. Yes. And I just thank you again for sharing your story. And friend, I hope you've been encouraged today, whether you're walking through this kind of situation or have, or you know someone who

SPEAKER_00 1:24:13

is, or you see a family and just knowing how to better relate to them. That has even helped me. So thank you for joining us. And I hope you join us next time on Thrive in the Mess.