When Life Is Up-Ended: Lessons Learned with a Chronic Illness Child, & Lisa’s friend, Hasin! | Thrive In The Mess | Hutchcraft Ministries

Lisa:
Welcome to Thrive in the Mess. I'm your host, Lisa Hutchcraft Whitmer. 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 Hayson. We connected online a few years ago and she was excited.

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 her, but she's here to encourage us today and we are going to be hearing from her about walking through the mess of having a young child with a chronic illness. And Heysen, 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 and just kinda take us back to that.

Hasin:
Like your pregnancy and Yeah, so um I was teaching high school math. And and I was coaching volleyball and I got pregnant with my fourth baby. So um she was a s a surprise, but in the best way, like we were kinda like, God, just if it's your will, then we're gonna have a baby, you know.

And so um I had had great pregnancies with my other three. I was like, whoo, this will be a breeze, just like all the other ones. But instantly from the beginning, I was sick, very sick.

Um 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.

Um, 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 him like I'm not I don't feel good. So I called my mom who has twenty five weeks.

Yes. So I had never actually been in active labor before. Okay.

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 what people are always like, You're crazy My husband coaches basketball and he had district tournament that night.

Lisa:
So they were said, we want to keep you and monitor.

Hasin:
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 kinda 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. And we'll monitor for an hour and then we're gonna like send you home and like do an overnight year and test.

you know, because that's how they figure out what's going on.

Lisa:
So I'm like, cool, let's do that.

Hasin:
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 gonna 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. Um So for whatever reason, last minute I s said well obviously not whatever reason, God was telling me take a driver.

Lisa:
Right.

Hasin:
We go and um, 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 to a bigger hospital because they were like, we can't deliver a baby at 25 weeks here. Um so my sister was like, well, I mean, we can drive You know, we haven't eaten yet.

Lisa:
You're like, I went to the game. Come on, exactly.

Hasin:
We hadn'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. Like 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. 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, you know?

Lisa:
Right.

Hasin:
Um, so anyway, I was admitted. I was there for a week um on constant magnesium and Steroids and at the time stop labor and to help 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 kinda like a race, like to see what could happen.

Lisa:
Oh my goodness.

Hasin:
Um so I was on like all these blood pressure medications and all of that. So um No pressure with she them trying to was fine. What on monitoring.

She was fine. Active. Great.

They were like, the baby's great. She's just really small because she's only twenty-six weeks at you know at that time. At that point.

Well then um of course they bring in all these doctors to talk to you. And um 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.

Oh 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 oh sorry 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. Wow.

God will keep your baby for a reason, you know.

Lisa:
And uh so I did get to meet her. Wow and what comforting words to hear in the middle of that going on.

Hasin:
Yeah, because it was scary because I was just like, I don't feel bad.

Lisa:
Right.

Hasin:
You know, like I'm uncomfortable. But like why can't I just keep her in?

Lisa:
Right.

Hasin:
You know, and of course now looking back, um, 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.

Lisa:
If I hadn't complained about it, they would have never put me in there

Hasin:
If I hadn't pushed my doctor telling her something was wrong, I never would have had to have had her early. Um, so that's kind of how I went into it. I fought kind of tooth and nail to like not have to have her.

Um but on the day that we had her, well the night, it was like nine o'clock at night, the doctors just came in and were like, my husband was fishing. somewhere. Yeah.

And uh because that's what he does. He's a fishing guide. And um they were like he has an hour to get here.

Like we have to we have to get her out. And so um Was he out on a river somewhere fishing? He was at the lake.

Um he did get there. But uh so at twenty-seven weeks on the day is when she was delivered.

Lisa:
Wow. Okay, so were you okay at that at that moment? Like does Blood pressure subside right away at that moment? No. Or did they still have to take care of you and what was going on with her then?

Hasin:
because I hadn't got to see any of my other ones. And I was like, I want to watch the U C C section. Okay.

Um 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 y you know, if you've had C sections before then you're like whatever, it's fine. Um but the one thing that I noticed was like I wasn't bleeding Yeah.

And I was like, that's weird. Normal. Is that normal?

Oh no, because the doctors even, you know, there's a ton of doctors in there and doctors for her and doctors for me. And um they were like, hmm and they scooped her out and of course she's uh d I mean, dead. Like it looks like she's dead.

She's not breathing. Um and so they handed her over. Well at that point I'm like crying, you know, 'cause I'm like, she's not crying and I don't know why I expect to be a little bit more than a little bit.

Lisa:
And were they concerned you could even have a stroke at that moment too?

Hasin:
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 and I was like, you go with the baby. So he went with her.

So the doctors are over working on her and um they intubated her immediately right there. Um I did they had him She was one pound fourteen ounces. Okay.

Thirteen inches. Um so they have to wrap them in like cellophane's what it looks like. Um so I only have to like even uh they didn't open for weeks.

Really? Okay. So I got to see her little face.

Um, 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.

Lisa:
Oh my god.

Hasin:
And they said that my the umbilical cord was completely not viable. our cells were not.

Lisa:
They don't um how's amazing 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 God just like sustained her in there. Yeah.

Oh my god.

Hasin:
Well and I mean I know that was God telling me like you've gotta get this, you know, you need to go, you need to go, you need to go.

Lisa:
So the guilt that I carried was I just I constantly was like

Hasin:
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 um I mean my recovery was a little worse than the other ones. I was in the hospital for a week But um so I didn't get to see Berkeley until she was four or five days old.

Lisa:
Really? Okay. But I mean Because they had to take care of her.

You had were you guys in the same hospital or no? We were, yeah. You were okay.

At this time, yeah. Right Okay, so she's born, uh 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 she's even she even made it.

Hasin:
Well the first um of course my husband would go down and take videos and show me and um you know they put her in the little incubator and um 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 um being like, you know, she's gonna she's gonna get out of here in no time. She's strong and a little fighter and so great.

And uh so I really wasn't nervous about her. To me, premies, 'cause 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. Um until you know, you live in a the NICU for eleven months.

And now I'm like, that is not what premiums are. Eleven months.

Lisa:
So all that they said about, oh she'll go home soon. Went down the drain. Okay. Wow. Um

Hasin:
Two weeks is at two weeks old, so after a about a week old, so I had only been able to see her for a couple of days before she started to get worse. Um and they you know, they did all the interventions. She had chest tubes, she had uh collapsed lungs just uh I can't even picture that going on.

And so surgeries to to get her lungs to open and to put in tubes and wires and drains and all these things Um and at two weeks they had exhausted all the resources is what they say. Um she was maxed out on everything. They you know, were 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 next book, you know, and all that. Yeah. And so uh the doctor at two weeks um They it was a Sunday morning 'cause my dad was preaching and I had to call him during the during his sermon.

But I was they told me, you know, like We're gonna have to do a surgery, you gotta 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 um they wouldn't let me in there and they sent the chaplain and then they sent a grief counselor.

Lisa:
And I was like, You guys are trying to prep me.

Hasin:
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.

Lisa:
We have three other kids, you know, somebody had to go home.

Hasin:
Um and so anyway they send all these people in to prep me and I'm like calling my mom like they're they're gonna let her die, like she's gonna die And so I remember I called my dad, I was like, Stop the sermon, start praying, like Berkeley's not gonna make it. Wow. Called my husband.

Lisa:
He was in the best place for you to call it that first.

Hasin:
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, um, 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. Um 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 gonna do anything to kid 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 just to not for it to end up?

For it to circle the drain. Right. To go down the drain.

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 you know, like I don't remember some things because you know, 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 God does 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. Wow. 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, we're 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. Um and the crazy thing is is that was the last time I cried with her in the hospital.

Lisa:
Oh wow. Yeah. You know what it it almost seems like a a a a turning point in some of these trauma trauma moments, like which way are you gonna go?

Like we see that in movies. Like you have that bo you know, and then it's like which way are you gonna go? And It was like at that moment, how wise of your husband to like say, Okay, and the decision and then literally so you went back over there, called wow.

Like you gonna have faith or are you not?

Hasin:
Like you know. Um And and then it made sense. Like you're right, I'm saying that I have full trust in God to handle this, but here I am bawling and squalling like he doesn't have full control over the situation.

Lisa:
Wow.

Hasin:
Um So after that we were transferred. I called around to different hospitals. We got a hospital um St. Louis Children's. 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. Um, and so there was a rare genetic specialist in St. Louis who said he would take her case. Um 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?

Lisa:
Quick question, did they ever know why your body was rejecting her? So that happened. And so whatever was going on in her I d I d 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 talk about it. We never found like all the genetics came back perfectly fine.

Hasin:
Just really we don't know. I mean, I know. I know that it was just God needed her testimony. Like

Lisa:
Uh it's just because that had to happen. Wow. There is no we have no joy like just seeing her pictures and stuff.

I was like I was like, you know it'd be fun to have her on here, but I don't know if she knows it through the whole thing. So Yeah. Maybe chasing her around, knock over the camera, get a close up of her.

Hasin:
That'd be fun.

Lisa:
But uh 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 have God must have just kind of sustained her. Oh yeah. Because they could keep caring for her.

Hasin:
I mean, I know like Some of the things that I d 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 gotta take over. But I it was kind of like a tug of war. Like, take over, what can I do?

Take over, no me

Lisa:
And so that's the story of our life.

Hasin:
You know, now I look back on it and I can literally feel God's presence in there. You know, like I can remember sitting on the couch and it just feeling like, you know, 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.

Lisa:
So Wow. Yeah. Okay, one did you have a favorite verse on the wall? I know you said you had verses, but I did. I was three and I even wrote 'em down.

Hasin:
Um I I kinda chop verses. I don't know if you knew that, you know, you where you kinda like take out your pieces that you 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 sh and the shirts said, Be joyful in hope. Um, patient in affliction and faithful in prayer. And so that was kind of our motto the whole time was patient in affliction.

Lisa:
That's a big thing. Would you say eleven months? In the NICU?

Ooh, that's a big one there. That has to be from God. I don't know that I'd be very patient or all that, but Wow.

So those are some powerful and hopeful words in the middle of all that. And I'm sure the story isn't done. So you get to another hospital.

Did they were they concerned she wasn't going to make it? Was there anything still uh like was there any turnaround? Did things get worse before she began improving?

They did, yeah.

Hasin:
When we got to St. Louis, um we Of course they were just kind of like, what are we gonna do that they didn't do there? So um at first you just have tons of tons of doctors that are all just trying to figure out what's our course of action. Um and so we basically just let her grow um until she was four and a half months old. And at that point she's been intubated this whole time.

Lisa:
So she can't move.

Hasin:
During that time, pretty much.

Lisa:
I mean but not not declining, circling the drinking.

Hasin:
Um 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 um 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. Um so all of those came back that it wasn't that and so At four and a half months they basically were like, She's not getting any better, but she's still intubated and um her quality of life will start declining 'cause she's been intubated for so long and I had been They had thrown the word trake around, um, just to get the trach.

And at the time it was so scary 'cause I was like, what does a trach mean even?

Lisa:
Like I've I've heard of it, I've seen it, but I don't know what it does their way.

Hasin:
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

Lisa:
Does that happen when they're intubated then?

Hasin:
Is that what it 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. Um so what's a trake or something. No, it's okay.

You know, you see it. And you probably need to be a doctor now after all you've gone through. Where they, you know, will cut their throat and put something in there.

Okay. Yeah. Um so that trach is basically you can't lose an airway that way.

Lisa:
Um because babies

Hasin:
like Berkeley, their airways are not hardened like ours are. Gotcha. Um to where they just close on their own.

Lisa:
Wow.

Hasin:
So she breathed through her nose, the air wouldn't go through, but it could go through her throat.

Lisa:
Okay.

Hasin:
Um so they wanted to do a trait just so I could hold her. Um and get her out of bed because it's safer because I'm not sure. I had been able to hold her but only for like two or three minutes at a time and only a handful of times.

Lisa:
Wow.

Hasin:
Um so I was like, you know, what the heck?

Lisa:
Just do the surgery.

Hasin:
I mean it can't really get worse than where we're at. And maybe that physical contact would be exactly 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.

Lisa:
And such a benefit to her too. Like it is that mother baby connection is It feeds on each other, you know. So yeah, wow.

Hasin:
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 trake placed. It definitely got worse for about a month.

Um 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.

Um so it definitely got hard there. But then at about six months she did you ever regret that?

Lisa:
Like if someone is going through that were you like, okay, or just okay, well we had peace about doing that, we're gonna stay the court. Yeah, no, I didn't regret

Hasin:
doing the trake. Um because if anything, at least we had gotten she had gotten a better quality of life, gotten to get out of the bed. Right.

You know, And I'd gotten a hold of her. Right. And so it wasn't it was her lungs that didn't wanna the difference in pressures.

It's crazy, it's just a difference in how hard the air was coming into her lungs. 'Cause the machine, the ventilator is breathing for her. Right.

Um, and so sometimes they try and fight that because it's foreign.

Lisa:
So, okay, I I Just a quick little thing so I can understand. So the ventilator breathes, but then when you have a trach you don't need a ventilator anymore.

Hasin:
So the trach is just the instrument to get the air into the body. So your her trach's only about this long. Um and it kinda 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. But for now she has to have it.

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.

Lisa:
Gotcha.

Hasin:
The ventilator You don't necessarily have to have a track to be on a ventilator. People like like on a BIPAP or a CPAP, like those are little ventilators. They're breathing for you.

Right. Okay. Um So the ventilator's the machine that's breathing, the trach is the instrument letting her air get through to her lungs.

Lisa:
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 very good thing.

Hasin:
She's on a ventilator, she's on oxygen, okay. And she has a feeding button.

Lisa:
Wow. Now what does that mean, feeding button?

Hasin:
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 tracked they do not let things go in their mouth because she went for six month well, nine months without having anything in her mouth

Lisa:
Oh it's so crazy. Um but Berkeley eats. Wow.

So and things don't like cross or go down the wrong tube or anything. I have no intro trade. People ask me all the time.

So in your view diagram, this formula you have two like

Hasin:
Your throat comes down and you have two holes. One's your airway. You know when people say it went down the wrong pipe.

Right. Went down the wrong side. And you can't. One goes to your lungs, one goes through to your stomach.

Okay. The trach is in the hole for the lungs. So nothing can be.

Lisa:
So nothing can go in there.

Hasin:
Yeah.

Lisa:
So that's that's amazing that so she eats what so fast forward, she is three. She's three, yeah. So and but this is a chronic ongoing thing.

You you're dealing with all this And there's a lot of messy from like and I well first of all before we jump to that, uh 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 of myself with it.

Hasin:
Um When things are gonna happen, you see a lot while you're in there. Um 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. And for today. Oh and so you just kinda have to take it day by day whenever you have a kid who's

Lisa:
one of those where they just don't know.

Hasin:
Um so she did really well at nine months. I finally got to um get a swallow study to give her a bottle. And once she was eating by mouth, she got exponentially better really quick.

Um until we were able to transfer to Arkansas Children's because we were in St. Louis, so we were six hours from Right. Talk about you know 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. Right. Um but we were transferred to Arkansas to be to start getting to go home.

So we transferred to Arkansas and were there for a little over a month, getting the training to be able to go home and nursing at home and the equipment to our house and All of those things. And she got to go home right before Christmas.

Lisa:
Wow. Merry Christmas to you guys. Wow.

So okay. I I there's uh some different strands here I just kinda wanna um ask about. One is you're apart from your children during that time.

Yeah. How is that for your mothering heart? And then I 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 kinda speak to some of that, someone else who might be going through that, like your experience, but you know, what do you say to someone going through that?

Hasin:
That's

Lisa:
It's really hard.

Hasin:
Um, 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 be like, I don't know how you do this. Um 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.

Um, you know, it's really expensive. Pl one, like you leave your job, so we were down a job, an income, and then Right. I'm having to pay like I stayed in the Ronald McDonald House, which is amazing.

If you want to give to a charity, give to that one. Um So that wa you know, my roommate my room was covered, but I still eat just meals, gas, all the things. There's no home cooking or anything.

Um you can only eat hospital food so much. And believe it or not, hospital foods more expensive usually than eating outside of the hospital. Um but anyway, that's a whole other rant.

I have a l a laundry list of things hospitals could do better. Um But my other kids actually ended up going and s and staying with my parents. They live in Jasper.

Oh, 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 ten every night.

Lisa:
Okay, and the timeline uh that that would have been in the spring and they then they would've had summer and then she came home Christ So, yeah, so they went through a whole yeah, like the end of a school year, summer, and then beginning a new school year.

Hasin:
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 you know, my husband would get them on the weekends or whatever. But um he My my oldest was two. Exactly.

He was, you know, we and he had to work as much as he could. Um and he's a fishing guide, so he started just taking as many trips as he could when he wasn't at school and so anyway, it was just we did the best we could at the time, you know. Of course we look back and he's like, I should have been better.

I should have been with the kids because at the time I wasn't thinking about the trauma to them. You know, they expected a little sister to come home and she didn't.

Lisa:
Right. And mom didn't Then mom didn't come home. Right.

Hasin:
Um 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 s you know, months. Um and they FaceTime me and hear the beeping and they hear you know, you don't think about those things

Lisa:
Right.

Hasin:
Because I've lived in it, so the beeping of the hospital wasn't scary to me. It became your new normal. Right.

Right. But my seven year old if she hears an ambulance will immediately start crying. Oh because it's coming for her, sister.

You know, like just little things like that I didn't think about at the time. Um, so my oldest was 10 and at the time that Berkeley was born. So I had a 10-year-old, an eight-year-old, and then Tegan was three For you.

So still like young. She was four.

Lisa:
No teenager in the mix to like bring a maybe. So she was four.

Hasin:
And so um The separation anxiety, we still deal with that with my youngest. Um you know, just thinking every time I leave I may not come back and every time I take Berkeley to out 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.

Lisa:
Just because of the but that's hard because if it's a doctor's appointment that's a little much to and the doctor hospitals are weird about who they let come in, you know.

Hasin:
And so um I usually just tell her like I'm I I will come back. Yeah. I will come back. I just don't know when. It's different. I try not to make promises of I'll I'll see you tonight because I might not

Lisa:
You know, and I know you had a recent hospital, John, with you know detour recently. So that probably how does that go for your child who like has gone through some of that? Trauma, the separation.

Hasin:
They've gotten better now.

Lisa:
Um, especially now that my oldest she's thirteen.

Hasin:
She's a caregiver for Berkeley. She knows how to do everything. Um so she has really stepped up and taken over kind of in the mothering role whenever I've gone. Um 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.

Lisa:
Right.

Hasin:
Um and it's not as scary coming from Big Sister because she's saying it's gonna be okay. So it's gonna be okay. Yeah. Um and anytime that we go to the doctor or if Berkeley's sick and we have to g go to the emergency room, um I just tell them, you know, like we It it may be a week, it may be two weeks, but like I'm gonna 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 part of the message.

Lisa:
It's just part of it now. I mean they just know that it's just that's part of our life now. Yeah Uh and even in the mess, I think of what your husband said of you know, he should have 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, pray through, uh literally one day at a time and so we can only make the best decision on that day, you know, and I I I think of even like with Rick and me, I've said this a at times that with parenting in general, like there's so many gaps. Even if you don't have it, deal with like a NICU stay and and things like that And we always were just praying, okay, God, can you please fill in the gaps? 'Cause Rick's gonna fall short, Lisa's gonna fall short, and we're gonna uh leave some scars on our children unintentionally uh d you know, even and it's will you please fill in the gaps with that.

So, you know, in those moments you you kinda have to give yourself grace probably too of you know what, we're doing the best we can 'cause w what else are you supposed to you can't like commute back and forth and not everyone lives in a big metro area by a hospital that's going to be able to take care of Yeah. Well 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, home have to drive her to Little Rock.

Hasin:
And people will be like, We have a hospital in the Northwest.

Lisa:
It's different.

Hasin:
They can't they can't take her.

Lisa:
The issues, right, right. So they still have to go. Yeah, I even one of my nephews he had to go back to his um lake 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 kinda 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 y 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 and

Hasin:
Well and when you 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.

Lisa:
Like and so um

Hasin:
We had just moved, we kind of moved out. And so at one point, you know, they were telling us like you guys are gonna 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 What if power because of her oxygen? Because the ventilator has to have power. You know, so my husband was like, We're gonna 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 and get new job get y 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

Lisa:
Wow, I was like, I won't be able to go back to teaching.

Hasin:
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 driving the mess right there. You're in the NICU getting a degree in accounting.

Well So I was like, I'll have to work from home, but you know, he can't leave his job and so Yeah, you go home and you think in your mind, we're gonna get to we get to go home and it's gonna 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.

It still is still have someone new in your house, right? 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 yeah medical stuff. Yeah. Um, you know, it was cr it's crazy things.

Like I had to make sure that our backfield a helicopter could land in it. So we had to call Aravak, make sure they can land out there make sure that the the lines are not too close. Yeah.

We had to get a generator, you know, like m buy a big huge generator so that it can keep everything going and So many details.

Lisa:
There's a ton of details you do not think about. Yeah. Wow.

Oh my goodness. I'm just trying to process all of this even. And okay, so your home and um things are you know, I even think of when we brought our babies home.

It was like you're you feel a little like, okay, we're like it's just us now. They let me work this baby home. Now what do I do?

We're in charge and like, you know, things I You know, and that's a lot, but then to have all like the the medical things to deal with. Um, so but today then I n your everyday what does that look like? Because I'm sure you have to keep you know, things clean, like do you have to clean a drink?

I have no idea you do.

Hasin:
And so when she first came home, I had a of course talked to multiple parents in the same situation. A lot of parents that I talked to this they were own 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.

Lisa:
Right.

Hasin:
I'm not gonna 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 gonna make them not play on sports teams or not go to their friends' houses.

Um You know, things like that. So I had to really think about and my husband and I had to talk about like, are we gonna let visitors come over? Yeah, I have a huge family.

I'm not gonna not have people come over. So I am probably one of th I don't know that I'm a great examp I 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. Um to an extent, obviously. Right, right, right.

But I just was like, we're gonna have common sense, you know, we're gonna wash our hands. If you're sick, you're not gonna be around her. If you're sick, you can't come over.

Like things like that.

Lisa:
Right, right.

Hasin:
Um and so that's kinda how we chose to run it at our house So even today, I treat Berkeley just like any other three-year-old. Um, she just has extra accessories, is what we always say. Like she just has cool equipment.

American girl doll with a kid. She you know, it's not like most little kids where I could transition her to a toddler bed and like I mean I am about to transition her once I get a bed, but but it's just, you know, you have to think about cause 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 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. Oh anything pink and you like paint the medical equipment like something pink. You can't accessible.

Um but she doesn't know any different. Right. One thing about it.

You know, I get the comment a lot, like how could you do that to her and make her be on the leash and make her be tied to a vent She has no idea that that's not normal. She'll go up to my her cousins and lift their shirt up to see where their milk goes. You know, she doesn't know that all babies' milk doesn't go into their belly bu like their belly like hers does.

Lisa:
Right.

Hasin:
Or if they have to take medicine, you know, she'll be like in their button. That's her normal. Because she she thinks you're weird.

Yeah. You know, like they think it's weird for her. She thinks you're weird.

Lisa:
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, they all did. Their whole family did.

So he just was like, Well, everyone does. He goes to kindergarten. He's like, everyone's a model.

Yeah. her normal and she doesn't know any different. And I know one of my friends um told me uh her daughter um uh is in a wheelchair And she's like, it's like being left handed.

You don't view it as that, you know, it's just but I d well we'll get to something else. We'll talk about like how people Do they talk to you? Like when there's someone I other than saying, are they, you know, why is she on a leash and things?

But okay, so your day today is um Does she wake up in the night? What do you do with the thing? We're very routine.

That's one thing about her.

Hasin:
Um, as far as she goes, she's still the only thing she has wrong with her is her lungs. Um, 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?

All of that. So she has no other deficits. We have no deficits logged that we know about.

But there are things with her that are Tendencies that aren't normal, you know, but it's things like her routine can't change.

Lisa:
Um

Hasin:
She's very you know, like if you're gonna if you approach her and you have anything that looks like a needle, you know, she's gonna like immediately walk away from you. Like things like that. Like the things you know, um she can't lay on a flat surface, a hard surface.

She's scared of hard surface. You know, like it's weird little things like that. Interesting.

But outside of that, she's completely normal. But we all have videos like that. She runs, she jumps, she eats, she plays, she jokes, she laughs, she sings, you know, she does all the things Um typical day 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.

Lisa:
Wow. Um isn't but she But a lot of that comes from you guys as parents, I feel like too, 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

Hasin:
Well I don't let people treat her any different either. Like you're not gonna treat my child like a sick kid.

Lisa:
Wow.

Hasin:
She's not sick, she's just

Lisa:
Different. Yeah. You know?

Yeah. Um I like that there there are limitations, mm-hmm, but you're not letting the limitations Limit you. No, we'll figure out a way to make it work.

Yeah, we'll figure out a way to ha to let it happen. And something a little probably a little controversial in some ways. I I uh you have let her go Well, not swimming, but be in the water.

I have, yes. And so uh like a little pool. We have a pool at our house.

Hasin:
Um all my kids we're big water people. Um and so she of course if water gets in her trach she'll drown and die. Like it's Wow, it's a very dangerous, very dangerous thing.

There's nothing you can do once there's a hole in her neck, straight to her lungs, you know. Um so we taught all of our kids like she absolutely cannot get water in her throat with a bath, she always loved baths. In the in the NICU, I brought in a whole thing, like a tub and everything.

And I would always do bathtime and lavender and bubbles and you know, so it's always been her thing. She loved the water. So I was like She's gonna love getting in the pool.

Well, she can sprint now and be off of her ventilator, which means that she's disconnected from the ventilator and so she just has her trach, which is still Open access. I was pitching her sprinting to the point. No, no, no, no, no. It's called a sprint because it's basically her lungs getting to work on their own.

Gotcha. Um kind of okay.

Hasin:
Like a sprint, like a sprinter would. Who's picturing her run into the phone? Like, oh no.

Hasin:
She will do that. But I've also taught Berkeley. She knows what it means to die.

Um 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. Um so she knows and she'll tell you, can't go in the water, I die.

Lisa:
Wow.

Hasin:
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.

Lisa:
Right, right.

Hasin:
Uh obviously without someone holding her, but she loves it.

Lisa:
Wow.

Hasin:
Every day she wants to go swim.

Lisa:
You know, I I 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 know 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 uh the ventilator?

Hasin:
Well, right now, um 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 kinda lungs are like a long game.

You you You run and you fall down the hill. You run and you fall down the hill. Um so right now, knock on wood, she's up to about three hours most days.

Lisa:
Um it just depends. So another way she's uh sh 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 over there. You just move over there.

Hasin:
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 stuff.

Lisa:
Right. Okay. Okay.

No, it just moves with her. Okay. So what would you tell someone?

I want to jump back to Nikki. What would you tell a mom there. I'm gonna 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 th you know, one so can you just kind of touch on You know, whether they're there in person, whether they're not, what would you say to them in that moment? Like how do you walk through that mess? That's a lot.

Hasin:
Number one, I think, because when you stay in the NICU, there are babies who their parents are there. There are some who they aren't there, and you never know what the reason is.

Lisa:
Right.

Hasin:
Um, because you know, life is still happening. You still have to work. Yeah.

Some people still have other children. Some people are single moms. Some people maybe 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 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, you know, they need mom too. Um so I think that it's just really important to talk if you are, you know, as a couple and figure out what is a game plan that we can do The sad reality for Pete and I is that like we didn't get to have a relationship at that point. We were partners trying to make it work.

Lisa:
Right.

Hasin:
You know, like we couldn't focus on when do I get to see you like he came to visit a few times just but he'd be there the day you know and and he made that work but if that can't happen you just have to be like what are we gonna do who's gonna take what And split up and divide and conquer is what we had to do. Because life keeps going like that. Because you do still have life going on.

Yeah. And you have to prioritize yourself too. I mean You know, it's focus and and looking back now, I am like, oh, here's what I would do different.

Um One thing I did do while I was in the NICU is I I got a routine going and for me that helped me get up in the mornings. Um because chronic stress really it's real. It really is something that will just tear you down.

Um so finding that routine and then if you're sitting in a NICU like you know like I was and gonna be there a long time, hobbies, reading. Um I, you know, I made bracelets, I d wrote in a journal, I read books, I did all kinds of things um 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 shit. And it was just something silly, you know, but it's No, if it keeps you going. Because it got you out of the hospital and you got to forget where you were at for an hour.

Lisa:
Yeah. Yeah.

Hasin:
And then you can go back.

Lisa:
And you don't hear the beeping machines like you talked about and all the it it's just even if you make it um homey in a way, there's still like the verses and the things it It still is more sterile. It's a hospital. It is. It's a hospital. You know, and you're a guest in that hospital.

Hasin:
Like that's your child, but you're a guest.

Lisa:
Right.

Hasin:
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.

Lisa:
Yeah.

Hasin:
I think one of the things I didn't realize when I went in was that like the doctor's word is not the final word necessarily. Um but In in a sense, they can kick you out of there. You know, like 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?

Lisa:
When do I do something?

Hasin:
When do I not speak up? What do you do with that? How do you advocate or not?

Lisa:
You learn.

Hasin:
I spent a lot of time asking questions to my nurses. You you you really m Former relationships with your nurses. They're in there all day with you.

Right. Um and I got to where, you know, I'd ask ask questions. I'd say if this was your baby, what would you ask?

Lisa:
Right.

Hasin:
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.

Lisa:
Right

Hasin:
Um but I just I learned, I asked questions, I found people who had walked in that. Like I said, I I yeah some of my friends now that I talk to all the time are Nikki moms that I met because I searched them up on Facebook. Well you know, I joined a bunch of groups, I followed people.

Lisa:
So community is a big part of you walking through this, other people in this And not there is not one there's not one path that's gonna be the same.

Hasin:
Right. 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. Um, I even to this day, I'll be like, okay. Here's what happened.

Lisa:
Am I being crazy or should I like call the emergency room? Oh, right.

Hasin:
You know, and she'll be like, oh, just do this, and that should help it, you know? Um, and their decanular, like her baby or her he's five He's not a baby, but they're decannulated. Like she's been through the whole thing, but it'll just be his trach out.

Oh de traximate canannulated. That's a lot of syllables for me. Um but you know, like she's just That's our friendship.

It's just a trait mom friendship and we follow each other. How amazing.

Lisa:
You have to find people through social media. You're able to connect with groups and there's so much online even. I don't know how people A lot of people hate social media, but I think it's a beautiful thing.

But there that's a plus then r plus thing for wow. So community is important with e even the after. Like 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 in survival mode, I would think, their other parents.

Hasin:
In the part of the hospital that I was in. Um, it was very isolated. You're in isolation a lot.

Lisa:
And so you really couldn't go.

Hasin:
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. So that is important. But it's also very hard to get close to people because you never know how long they're gonna be there

Lisa:
there. Right.

Hasin:
Um so I did have that's hard friends that were there. Um 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 Wow.

Lisa:
Like Nickupod. Yeah.

Hasin:
But pod. That seems even more isolated.

Lisa:
Yeah. In a way. Yeah.

Well, with other 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 Right. 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 uh and medical people and not with the 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, you know, place you could get a massage, you could, you know find some other community, get your accounting degree. Like that's mind blowing.

I'm just like, wow, you know, because it takes emotional bandwidth to even walk through carry 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 or so 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 um uh you were going to lose her as time went on more. And do you ever feel like that now?

Hasin:
And can you just speak to that? It's just I mean, it's a reality that like she could die any day. Um that's just There's their hearts are overcompensating.

Her lungs are the problem, but her heart is overcompensating for weak lungs. You know, like she could go into cardiac arrest. She could Really There's all kinds of things.

A lot of trait kids, I mean it's they get a plug which means snot gets stuck in the str trach tube and you don't get it out so they suffocate. I mean it's that's why she has to have a nurse twenty four hours a day. She has to have open eyes on her all the time.

Um so it's a lot but we just choose not to think about that You know, you can't dwell on all the things. 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, okay, God.

It was kind of like it made me think of like Abraham and Isaac, you know, just Uh you are in control. You're gonna 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.

Lisa:
Wow. And real quick the Abraham and Isaac story, just to touch on that, if no one's familiar with that, it's literally uh God had pr had prompted Abraham Go up to this mountain, take Isaac with you. And Isa Abraham knew he um he was going to have to sacrifice His son and God provided a ram to sacrifice instead because that was back during the sacrifices was the Israelite people and all of that during that time.

So Literally God does provide a ram in the bushes. Yes. On so many occasions.

So I love that.

Hasin:
And as the parent, Abraham had to just trust that God was in control. instead of saying oh no I'm not gonna take him. Forgot him down at the tent, you know.

So I remember just being like If that's all this is for, prepare my heart for that. So that when she passes away, my testimony doesn't I don't mess it up. by being emotional is basically what I was telling God.

Like I don't want to mess up what you're doing just because I get upset. So I need you to prepare my heart to let her go.

Lisa:
Wow.

Hasin:
And so if we get to that point, I'm ready and I have composure and I'm good 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, uh 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. Um, 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 'em she could live to be a hundred years old. Right. She could get this trake out and this'll 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 trake her whole life, or she could not live to be tin You know, like that's just where we are at.

So we live every day as if like she's just a normal little blessing and God's gonna work through her where he's supposed to work and just like with anybody else you're gonna be here as long as God needs you to be here.

Lisa:
Yeah.

Hasin:
And the only thing that I ever pray when it comes to that and with any of my kids, but it's you know, any of your kids could die at any minute. Yeah. But you don't sit around thinking about that.

Yeah. Um, but with Berkeley it's like it's a little more pres like It just seems like it's a little more likely. And so I'm just like I said, I just always pray that like God'll make sure my heart's ready because I'm gonna have three other kids to minister to.

I'm gonna have a husband to minister to.

Lisa:
Yeah.

Hasin:
I don't wanna be the hindrance. So like use me how you're supposed to as her mom.

Lisa:
Yeah.

Hasin:
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.

Lisa:
So Right. We have to be ready. Um but And we're not promised tomorrow.

I probably I I say that a lot in regards to um when my mom passed away uh several years ago that w literally my oldest graduated 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 in so on so many levels.

And um and we just treasure those moments. So I I love that, you know, I can't help but think of um there's a verse in Isaiah, after my mom passed away, I was really ready for my oldest to go to college. Like He was ready and 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 col you know, we we kinda have to get to that moment and how are we gonna handle it And I was I was like, Oh, this is great. You know your child's ready and things. But then, um, there wa I my mom died.

And I didn't want anyone to leave. I wanted all my people kinda close by. And God had to kinda there there's a verse in Isaiah and it basically is saying, um, the Lord goes before you, the God of Israel is your rear guard.

And I'm like, oh okay, 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 I, you know, just, okay, God, can I trust you with my Child, and I I hear you saying that too. Can I trust you? And the Lord goes before my son, you know.

I literally, and it literally was that moment where I'm like, okay I'm okay with this because I really wasn't. I was and then I wasn't. I'm like, I can't, you know, and he was gonna 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, you know, have our child just g in their in our living room when they're nice and safe, everything's child proof, they can't stick their finger in the plug and all that. But we either trust God or we don't with our child.

Hasin:
As you know, as a believer, I know that like she's not mine. You know, like 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 is like Thank you, Lord, for giving them to me while they're here on earth. Like thank you for trusting me with them. But like don't let me mess them up.

And like you're ultimately in control. They're your children, just like I'm your child Um and so it's it's hard. And I think that one of the biggest things with Berkeley, a lot of people say, well, if you knew um she was gonna 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's 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.

Lisa:
Oh my goodness.

Hasin:
So

Lisa:
And 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 didn't make it. And I think at one point, um, I 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?

Yep. Or something like that. She did.

Hasin:
We had a day where um After she got her trach placed and she was having tr trouble like her body adjusting, uh, before they put her into the medically induced coma, she just kept coding. and kept coding. Um 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

Lisa:
do the little bagging for air.

Hasin:
Um basically what that does is it will pop your lungs open really fast and so like it makes your lungs open. Um, and then do CPR. And so of course her little body I mean at two months old I 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 C PR 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 gonna put her into a coma, let her body rest.

Um and so then that's even worse 'cause you have this baby who's literally looks like a little dead baby. I mean, they're in a coma. Um 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.

Lisa:
So you have no idea is she alive or dead because she's on life support.

Hasin:
So You know, I uh 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 at some time I would kind of joke. And like you were a real punk today.

Or, you know, whatever. Um, 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.

Lisa:
Wow.

Hasin:
And I I mean I'm sure at that point it was like I can't even like elaborate on it because I'm so exhausted. So I didn't.

Lisa:
It just that's all it says.

Hasin:
It's so morbid.

Lisa:
You can tell the emo the emotional bandwidth again. Yeah Okay, I've had it but I want you to know.

Hasin:
I didn't elaborate.

Lisa:
I just you all you tried to die today. Yeah. Yeah.

Hasin:
Well I haven't read through it. I 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 need to see what's in there.

Lisa:
I have a question. I love to look for God sightings in the 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 it can be I've literally had someone after my mom died bring me offered to bring me my favorite sonic drink you know, and uh 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 I 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 anything that really jumps out like, wow, God.

Hasin:
I'm sure there's a lot um that I just would have to really think about. But um the first thing that came to mind when you said that is we had a nurse, um that she didn't n 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 sh 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 baby. Drier, dryer. To where I'm like, what did you just say to me?

Oh no. 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. Um, she stayed with Berkeley.

She took extra shifts if she knew that a certain like, you know, if if a doctor was gonna be off or if she thought that they might turn the vinyl 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. And she was an angel. Um 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 sitting there. Right, right.

Um 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. Um and I hope that she can look back on that and be like, she touched, you know. Yeah.

It was a mutual touching experience. But um she was definitely someone that I was like, God def he put you here because he knew that I needed someone on my side. No, I didn't. It was very unlikely.

Well, but we had so m I mean, the whole time we had people who helped us with so many things. Um you know, money's always a stressor when you're in the past.

Lisa:
reach out and encourage someone in that moment. Like you mentioned, gift cards or, you know, different kinds of things.

Hasin:
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 in England. You know, you w well and just the cost of keeping her alive every day.

I mean it's crazy. I can't imagine the medical. And I just you just God'll 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 gonna do?

Um and you just gotta do what you can do, you know. Uh if you're looking to help someone who's in the NICU there, if they're like me, I hate asking for help. I would never admit to needing help.

Um but They're not gonna say it. Yeah. But you know, like getting the random I would have friends text me and be like, I've been mowed you ten 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 because Amazon will ship to a hospital. Like people don't know that.

It's like you can ship to a hospital to a patient. You know, send them a care package or a meal, um the Grubhub cards or DoorDash cards, you know, things like that. It doesn't have to be big.

And I think that that's a thing is you feel like when you're gonna help someone you you're like I don't have a hundred dollars or two hundred dollars or whatever to help. Five dollars is a coffee and it brightens their day. You know like it's just nice to be like I wasn't gonna get a coffee because I can't waste money like that.

But now that someone sent it to me, I'm gonna send bucks. You know, because uh it wasn't I'm not wasting it.

Lisa:
Days, m weeks and months.

Hasin:
A my DoorDash card never ran out. Um and even now when I'm in the hospital with her, you know, like It cost me thirty dollars a day to eat at the hospital. Well that adds up whenever you aren't working.

Right. Um and I just actually finished a DoorDash card from when she was in the NICU. Like I've been able to use it on our hospital visits Wow.

So you know, it's just so such simple things. We of course did have people who were like, We're gonna pay your electric bill or we're gonna you know, and it was like You just feel so unworthy. Right.

But and so loved. And it just at the same time. But it's like you just you feel so unworthy of like other people and I would say that all the time.

Other people have it so much worse than we do

Lisa:
Wow.

Hasin:
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 Right. And so now I always tell myself, don't rob people of the blessing, like you know.

Lisa:
Yeah. But I I've had moments like that too, and that is uh you know, allowing someone to step in and help carry the load and what um uh you've touched a little on this with with some people who are like, okay, well you wouldn't have to have the medical cost. You would still be having two incomes. Um I we you know, she's attached all the time. What what you know, just some any final thoughts on that?

Hasin:
Um, 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. And their parents are like shh 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 you if you're shushing your child She's like, what's wrong with me?

Lisa:
Right. You know that they're they can't talk to me.

Hasin:
So I'm always like, let them ask. And even adults ask me. I don't care at all to explain what's going on.

Um because we do cart her through restaurants and it's like we're gonna we have to sit by a plug in, you know like and people are always like and I'm like we have to sit by a plug in So we'll wait, but we need to see by the plug-in. Um and and you know, like we'll say it, but a lot of it's just ignorance of when you think of life support, you think of a person who's actively dying. Right.

Oh, that's true. Not an active three-year-old. Not an active three-year-old who's technically on life support.

But it's so that she can live her life. It's supporting her life. You know, it's not allowing her to not leave.

I mean it is, but you know Um so I think a lot of it's ignorance. I didn't know much about a ventilator or a trach. If someone would have said a person on a ventilator, I instantly would have thought dying in a hospital.

Right. Or in a coma or something, you know.

Lisa:
Well I didn't even understand the trach totally and

Hasin:
Yeah, what that is. So it's just um that's why I share our story so openly on social media. I get a lot of hate for that about it's not my life to share.

But it is. And at this point I am sharing the blessing that God gave me with the world. And I mean it and I always tell my you know, my husband, if that's wrong, I'll answer for it because it's spreading awareness and I'm hoping that people will be able to be like, Oh, hey, that's a track and that's a ventilator.

I've seen this, you know. Right. And explain it.

But I hate when people are like, oh, don't go near her. And The funny things 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 gonna catch. Right. Um You're not gonna hurt her if you come play with her.

Like kids on the playground are always afraid to play with her.

Lisa:
Right.

Hasin:
You know, like and I'll say, Oh, you can play with her. She you know, she's just a regular kid. It's just I know this is a scary tube. Um So we just, you know, I don't ever want her to think she's something's wrong with her because she's perfect the way that she is.

Lisa:
Right. Um

Hasin:
And 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.

Lisa:
Right.

Hasin:
The thing that is really hard is when it's you're passing judgment on something you don't know anything about. Right.

Lisa:
Oh, that's a good point.

Hasin:
You know, like don't tell me how to take care of my kid when you've never been in my shoes. Right. I know it's hard.

Right. Um, she's not attached to a leash, she's not a dog. Like, you know, like um I'll joke and say, oh well 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. Um you know, just little things like that where I have really thick skin. Um, 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

Lisa:
But that's grew this too.

Hasin:
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.

Lisa:
Right.

Hasin:
A 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.

Lisa:
Yeah.

Hasin:
We don't go positive, we instantly go negative.

Lisa:
Like I 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 uh you know, anything that's um unknown or different we're like we back up a little bit and that's a lot of people with chronic illness or a disability of some kind or I anything like that. It's like Well, we don't know what to say or and so I love that a child is like children are like, Oh, what is that?

Just right out there. Yeah. Yeah, or they'll be like What's that noise?

Hasin:
You know, and it's like, oh, that's the machine. And yeah. And so I looked at the channel.

Lisa:
Which are so great to even take time to under uh like explain it to Because that will help them know and then hopefully next time they won't be uncomfortable with someone. So but what do you tell uh you know that parent of, hey, don't be afraid of us, don't be afraid of my child or I don't know, what would you

Hasin:
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 of the parent, if she can't, I'm gonna 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 wanna come play but you're not letting them, you know, well that's teaching your child not to be inclusive. That's also teaching my child that she's not worthy of being played with. Uh and she is.

Lisa:
Wow.

Hasin:
So, you know, it's just I and I get it. It's tough. Um I think that just from my perspective, if I didn't want people to ask me questions about her, I wouldn't go out.

Lisa:
Right.

Hasin:
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 But it's different for every family, like you said. Right. But parents are pretty good to be like, you're gonna know if they don't want you over there.

You know, just common sense will tell you like we should we shouldn't back 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.

Lisa:
Yeah. Um Wow. So that's powerful.

Any final thoughts on how you've seen God show up through all this and There there's a lot, a lot of layers of time alone, trusting uh you've already talked about like being willing to knowing she might die any moment, any day. um, even now and walking through that, but is there anything you would um encourage someone just of, you know, how y 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 I I I don't need that, but what would you say to, you know, anyone walking through that with faith or without faith?

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

Lisa:
Oh, right.

Hasin:
Um and so to those people, I think it's really important to remember that like God uses everything that happens for good. You know, there is so much goods that's come from Berkeley that never would have happened without her.

Lisa:
Wow.

Hasin:
Um and so It's it at the time I can't say that I was thinking, oh, oh, this is great. I'm so joyful and the blessings that are coming. No, I probably didn't think that.

Um, 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, mine this is such a little bitty trial compared to, you know, whatever.

Um, but then without faith, I I always felt so sad because you can see the people who have no hope in the situation. And I 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, um depressed.

But I would just say if 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 tr he's got you. Lean on someone. Find someone who have who you love who maybe does have the faith to give you and let them hold you up.

You know, just don't try and do it alone. Um I know that God can use anybody to reach anybody. Um so even the most stubborn of people, he's going to find someone to reach out to you.

Um so I mean, I think the best advice I could give if you're if you're someone who's like, ah, I'm not gonna depend on a God who would put me through this in the first place.

Lisa:
Right.

Hasin:
Um, then find someone you can depend on and let them help you.

Lisa:
Just don't try and do it by yourself. Right. Oh, that's good.

And you I and you also have talked about just so many um I things to do, like intentionally look for community. Intentionally you looked for another income source and literally Yeah, you have to be proactive You know, to be able to get a kid. Yeah.

Keeping busy is important.

Hasin:
Depression is hard to catch when you're running. You know, I ran from it. I ran from it because um 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. I could have So just you know, practical tips aside from being any faith-based anything would just be number one, get educated. Doctors are gonna talk over your head.

Um 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 gonna use big fancy words.

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. Um and so they'll talk about the the day, what they're gonna do, take notes, ask questions.

Um if you don't know what questions to ask, find someone who's been there and ask them what questions to ask.

Lisa:
Good.

Hasin:
So it's just like a you you can't just sit there all day. The days are long. Right, right.

The days are long and they're not very eventful in most cases. Um and so just Being educated on your situation, what you can ask, what you can't, find community, use social media, um, use you know, the hospitals have resources for you to reach out to people most of the time. Um 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. Um that has covered food cost, yes. Some have gas programs.

Wow. But you won't know if you don't ask. And so um You know, just asking what resources are available.

Yeah. Wow, this is also good. Yeah, staying busy, getting hobbies, find something that you'd like to do.

Teach yourself to crochet. Teach yourself to knit. Color and a coloring.

Sometimes I would just color because it's a mindless thing to do, but it kept me busy.

Lisa:
Right.

Hasin:
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.

Lisa:
I don't know why.

Hasin:
I mean I was in St. Louis, so it wasn't like I was gonna walk too far, but You know, just finding ways to get outside and and exercise care of yourself. You know, drink water. Make sure you're eating.

Like there was days where I'd be like, Did I eat today? I have no idea. Oh wow.

Like make sure you're not physically making yourself ill.

Lisa:
Right, right. Wow. Yeah.

These are some amazing 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 the just all the things that go along with it, you know, medically and emotionally and um just all the different strands, whether your children you talked about, you and your husband not being the I like around each other very much for almost a year and You know, there's a 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 uh I really thank you for being so open and sharing all this.

Any final words for anybody? That was a lot. That was great.

Hasin:
Yes. I I love to share and spread awareness and Um, that's what I hope to do through my social medias is you know, encourage people that might be going through this.

Lisa:
Um And you do. I love I I just feel like even your pictures, I feel 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, but you know that she is a big thing.

Hasin:
Well and those little trick babies, they're just a they're a different kind of spunk. They really are. But they have to be.

Lisa:
They felt that they're fine.

Hasin:
They have to fight to survive. Wow. And uh they're just so fun.

Wow. They're so sweet. Wow.

Um Final words would just be, you know, what uh if if you're just starting a trial or if you're in the middle of it and you're like, when is this ever gonna end? It will end. Um, 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. Um, and so, you know, the the trial doesn't last forever and it will get better

Lisa:
Wow.

Hasin:
Whether it's how you want it or not, it will get better.

Lisa:
Right.

Hasin:
Um, 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. Just one day at a time, one thing at a time. 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.

Lisa:
Yeah.

Hasin:
And that's all your brain can handle.

Lisa:
And just be okay with that. Yeah. So that's great for any stage 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 is or you see a family and And just knowing how to better relate to them.

That has even helped me. So um thank you for joining us. And I hope you join us next time on Thrive in the Mess.