SPEAKER_04 0:00

Here comes the sun do. Here comes the sun da say it's alright.

SPEAKER_05 0:19

Hello, Fortitude audience. Thank you so much for being with us again today. My name is Heather Kittelson and I am the host of Fortitude and my husband Amos, who is the co-host. And today we have Desiree with us. Hi. We're really excited to talk about this story with you, your story. It's been an honor to get to know you these past couple years, I would say. I have a very fond memory of meeting you at a parade when Little Sawyer was only a year old, which you have no reason to remember. We've talked about this because you are completely in the thick of it. In survival mode. You were. Yeah. Yep. And then come full circle, probably what, four or five, four years later, I um my good friend Rich McCorris, who is the pastor of King of Glory, asked if Amos and I would come speak at your church or speak at his church. And you happened to be there that day because you attend the church. And I was so, so grateful. Um, and in the interaction of talking with you, I learned that you have uh your husband Amos, which mine's Amos. So we share this. It's pretty wild. Yeah, it is very rare. And yeah, very rare. Um, we have what, four or five other Amos's that we know.

SPEAKER_01 1:44

There is a small, very intimate group of Amoses that I know when I say like we're a special bunch.

SPEAKER_05 1:52

I really think we need to have a gathering. Call all the amoses into one room and see what the world can handle that.

SPEAKER_03 1:59

A group of amoses all together.

SPEAKER_05 2:01

Everybody needs an amos. Um that's a thing. So when when I saw you that day, I learned multiple lessons, which was really cool when our little girls came up to you. Right. Yes. And I saw some other kids coming up to you, and we shared a moment that we will speak of in a little bit. Okay. But um, I want to just Desiree tell us a little bit about who you are today, and then we'll go to the day at the hospital.

SPEAKER_03 2:30

Um, well, I've come a long way. Um, I have Sawyer, it's my oldest. He's seven, and Enzo, who is almost two. Um my husband's name is Amos. Okay. And uh good guy. Yeah, yeah. Really good, solid guy. Solid guy. Um I I stay at home and I take care of Sawyer. He has several different disabilities between the two boys. Uh, they keep me very busy.

SPEAKER_05 2:59

And you recently, like within the week, just moved. Yes, and we also just moved to an acreage. Yep, yep. 12. Oh, yeah. We were just talking about how much work that is, but yet so beautiful. We eventually wanted an acreage. Maybe it's still in the plans. We don't know. I think Germany is closer than an acreage to Wow, that's amazing. I like that. Oh, that just made your day. So keep learning German, honey.

unknown 3:25

Okay.

SPEAKER_05 3:25

Keep learning. Don't wanna do it. So, Desiree, you sawyer is seven. So, seven years ago, you go to the hospital. Was it your actual due date? Yeah, I was overdue.

SPEAKER_03 3:38

Um yeah, by like a week and four days. And every ultrasound, everything leading up to it. It was so good. It was so perfect. Like the pregnancy, I was just like, man, people complain about being pregnant. Like, this is great. I don't feel bad at all. And everything came back wonderful and I had no problems. Okay. And that wasn't exactly how it went.

SPEAKER_05 4:02

Go there.

SPEAKER_03 4:02

Yeah. Yeah. Um, yeah, went to the hospital, went into labor, um, wanted to do the whole natural childbirth situation.

SPEAKER_05 4:12

And bless your heart.

SPEAKER_03 4:14

Yep, I was going for it. I'm I'm pretty stubborn or determined, however, you want to use that. Um, and just kept working through it. And we got to a point um where we started losing Sawyer's heartbeat on the like when I would have a contraction um and his heart rate would slow down significantly. And I didn't know what was going on. First, first child, you know, pretty um unprepared in that sense. Didn't know what to expect. So I'm like, this is normal. Like, yeah, you know, this just happens.

SPEAKER_05 4:47

And you're surrounded by doctors and nurses who know what they're doing. So you're just right.

SPEAKER_03 4:50

I'm like, if anything's going wrong, like they'll they'll come in and figure it out and it'll be all right. Um, so a nurse comes in and she's like, okay, we're gonna need to get you back in bed and make sure we get his heartbeat like back on. We're kind of losing it, like nothing to be concerned about. And I was like, okay. And I get in bed, and then I just start having contractions just like back to back, like on top of each other. And it just went from like kind of bad to like crazy, just like zero to a hundred of like pain and being confused, and then turning from one nurse in the room to four, five. And the room just kept filling up, and I didn't know what was going on. Nobody was telling me anything, and they just kept saying we need to get his heartbeat on the monitor, and all the while I'm actively contracting, and so they had to give me an injection to try to slow down the contractions um because they weren't getting able to get Sawyer's heartbeat. Um he didn't have a heartbeat during those contractions. I 100% don't know. Okay. Um, I know it was significantly slowed. Okay. Um, and the the lapse of time that went on from when I kind of started having all those contractions on top of each other until Sawyer was born. It's it's fuzzy for me. Um but yeah, I just I saw the room filling up with nurses and a doctor, and I knew that that wasn't really good. Um, but they weren't telling me, like, you know, don't don't tell her anything. Yeah. So I was just like, everything's fine. Everything's fine. They would tell me something's wrong.

SPEAKER_05 6:31

And then they rush into a c-section.

SPEAKER_03 6:33

Yeah. And they said, you know, we're gonna have to take you back for an emergency C-section. And I was just so upset because that wasn't that wasn't in my plan. Yep. You know, they tell you, like, hey, when you're pregnant, like you make sure you put a birth plan together and you have it, you know, stand your ground. And I was just like, yeah, this is what I'm supposed to do. Like, this is not part of the plan. Okay, like this is not what I want. And they're like, I don't care. We need to get the baby out. So they took me off and I was absolutely terrified. And I just remember crying. Yeah, you know, I they take me back and I'm talking to the anesthesiologist, and I'm just looking at him and I'm just bawling my eyes out. I'm like, is everything be okay? And he's like, Yep, we're just gonna get you to go to sleep, and you know, we'll get the baby out, and everything will be great. So they put you completely out. Yep. Okay. So you wake up and I am in the recovery room, and the nurse comes up to me, and I'm just so confused, like, what happened? Where's my baby? Um, she just kind of looks at me, she's like, Well, you have to stay in here for two hours. Um, just you know, you need to recover. Yep. And your baby's in the NICU. It's, you know, he's in there. And I was like, Okay, is he okay? And she would not answer my question. And um I kind of knew that since she wasn't answering my question, that there was something she wasn't sharing. Um did I feel did you feel it? Like as a mother, like the mother's heart. Just definitely had a heavy feeling. I'm like, he should be in here, or they should, if everything was fine, they would be like, Oh yeah, he's beautiful, you know, that's how much he weighed, or you know, whatever it was. Um like, he's okay, right? He's okay, right? He's okay, right? Okay, she just wouldn't answer. So here comes the first person to give you the news. Well, nobody came in to give me the news. I had to wait. Um, and then they wheeled me down in my bed because I was just like, let me see him. So they wheeled me down to the NICU in my bed. I couldn't walk or move. Um, and they said, like, okay, he's in the NICU. Like, you're gonna see him in the bassinet. Um, he might be hooked up to some monitors. I'm like, what are you talking about? Like, he's fine. He should be fine.

SPEAKER_05 8:51

I had a perfect pregnancy.

SPEAKER_03 8:52

Yeah. And they wheel me up and I just look in there and like I see him in fine. I see him in his little like fascinate, and he's has a breathing tube and IVs and all these other machines hooked up to him. Um I'm like, that's not my baby.

SPEAKER_02 9:23

Like and I thought for a moment and I was like, I'm not awake yet.

SPEAKER_03 9:28

Like, I'm still dreaming, you know. Um, and I just looked at him and there was a bunch of nurses in there, and the intensivist, which is the doctor of the NICU. She was in there, and um my dad and a couple other family members were there. They got a phone call, you know, saying, like, hey, this is you might want to be here. Um, so they were also in the room, and um the doctors looked at me and she said, you know, you're probably gonna have to plan a funeral um because you'll be he's he's probably not gonna make it. You know, that was her first, that was the first thing I heard from the doctor. Not, hey, this is what happened, um, this is what went wrong, like this is what we're working on with him. Um, it was that. And man, when she said that, I literally felt my heart shattered.

SPEAKER_02 10:27

I just knew that that moment my life was gonna be totally different. I was never going back to how it was before. Whatever that meant, like if he was gonna live or not, like it was gonna be a life-changing situation.

SPEAKER_03 10:47

Um, and she said, you know, you have to plan a funeral, and if he makes it, he's gonna be a complete vegetable. Her words. Her words were that a doctor said that.

SPEAKER_05 10:59

So PSA. Yeah, PSA would be more gentle, finessing, more compassionate.

SPEAKER_03 11:07

You would you would think that because you're working with super fragile infants and families and moms, and it's just like, wow, yeah, could could be delivered a lot better. Wow.

SPEAKER_05 11:19

Yeah. So you have not had to plan a funeral. This Sawyer is a fabulous human being, like in a fighter. So he is something else. What did you go through the next how many days? Like, when did you get to hold Sawyer? So I got to hold him.

SPEAKER_03 11:35

Okay, so first, since he was born, um, he went without oxygen for anywhere from the you could tell me 15 to 30 minutes. Okay. There's no, I don't know exactly how long. So he had a brain injury from lack of oxygen, and they put him on a cooling mat in an effort to slow the damage that's happening in his brain or stop it because you don't want more swelling. Okay. So they cool his body. Um, they put him on this little mat and wrapped his arms and legs and torso and everything in it. Um, and they keep his body at a certain temperature. And I think it was like 90 degrees. Okay. If I I can't totally recall. That's cooling. Cooling, yeah. 90? Yep.

SPEAKER_05 12:19

Oh, because I mean you're 97. That makes or 98.7. Okay. Yep. So they're keeping it at 90 degrees, his body.

SPEAKER_03 12:26

That slowed. So there'd be no more swelling, no more like continued damage in his brain. They wanted to just like, you know, when you have a sore where like you hurt your arm, you put an ice pack on it to like, you know, cool down the swelling. Kind of the same deal with him. Um, they had to do that for 72 hours after he was born. So I couldn't hold him until what? Like that makes it like the fourth day. Yeah. Um, so I had to just, I could only stand next to him and just hold his hand. Um, he was not coherent at all. Um, yeah, so that's really hard for a new mom. Um, and you see your baby hurt or hurting, and you can't do anything. You're just standing there. Um, not allowed to hold them. How much did Sawyer weigh when he was born? He was nine pounds. Yeah, because you said you were overdue. He was a solid baby. Okay. And everybody in the NICU was like, he's a giant baby. Yeah. We shouldn't see him in here. And that was just like additional like salt in the wound. Like, yeah, yeah, he shouldn't be in here.

SPEAKER_05 13:30

Wow. So four days, and then you get did they they took the cooling mat off?

SPEAKER_03 13:34

Yep, they they took the cooling mat off and then they do like a gradual warming process, is what they call it. Um, so I couldn't hold him until he was totally like back to you know that 98.7 or whatever it is. Um, yeah, and so that was intense. He had a breathing tube. He was on a ventilator breathing for him. He was not awake. Um, so I would they the nurses grabbed him, you know, picked him up and had to be two, three people moving him. And I was sitting in the chair and kind of just drape him over me so I could just kind of have him in my lap with all the things.

SPEAKER_05 14:11

What um when you talk about a the brain injury, did they give you any because if you were pushing and you didn't actually come out, when did the brain injury happen?

SPEAKER_03 14:24

So what I can understand, I never got a specific answer from them.

unknown 14:29

Okay.

SPEAKER_03 14:29

Um, they said they could speculate that he had the cord wrapped around his shoulders. Um, and so he was in like, you know, the birth canal and contractions of squeeze. And so during that squeeze, since the cord was around his shoulder, it would cut off the oxygen supply through the umbilical cord. Yep. Yeah. And so he was kind of stuck and just the con the contractions on top of each other were just like the pressure.

SPEAKER_05 14:55

Yeah. Okay. Oof. Yeah. So he's on a ventilator still. Um at the on this fourth day. And then like what what are you what are you going through with God at this time in this moment?

SPEAKER_03 15:12

I was mad. Yeah.

SPEAKER_05 15:13

I was so mad.

SPEAKER_03 15:15

I was just devastated and just, yeah.

SPEAKER_05 15:18

Cause there's still there's hope. People are right, uh, are they giving you hope and yet you're yet they're telling you to plan his funeral, and yet, like, what an emotional roller coaster for you in those days.

SPEAKER_03 15:28

It was wild. It was a lot of everything all over. Like, I'm grieving and just like trying to grasp the fact that this is my life, this is my baby, like this is what's going on. And then also like I'm a pretty realistic person. And then there's people that are like, oh, just keep praying, just keep praying. Like, God's gonna perform a miracle, and you know, we're gonna keep praying. And I'm like, Yeah, okay. Um, I hope so, you know, and like you want to be hopeful of that because if you don't have hope, then things go downhill pretty quickly.

SPEAKER_05 16:00

Yeah.

SPEAKER_03 16:00

Um, it was hard.

SPEAKER_01 16:03

A lot of opinions on like, hey, this is what I think you should do, this is how you should act, this is I've we I had that too when when my brother was suffering through leukemia. And uh I remember some someone saying, You need to tell him to do this, and you didn't tell him to do that. And Lord wants to heal him, and here's this podcast, and here's this resource. And it was like, dude, you think we're not trying this? Right. You know, you think I appreciate the emphasis, but you're not it's I don't have and you're not in this situation. I told this to my brother, and he said, Yeah, easy for him to say as I'm watching poison get pumped into me. Right, you know, to fight this thing, and I just totally sympathize with that. Yeah, emphasize that situation. So that's hard.

SPEAKER_05 16:46

You're the mom. This is my baby. I appreciate all your advice, and yet even the medical advice or what's been said so far has not been comforting or educating you or explaining anything to you. So he's like, I can't imagine the confusion, but yet you, as Sawyer's mom said, he's a fighter. I can I know it. I know he's a fighter. So no, I am not going to let go. I'm not, he's this is my baby, and I'm and you have words. What what were the words you said? I will keep fighting. As long as Sawyer keeps fighting. Yeah, yeah. And you you said that to him. Like you would say that to him as your baby. I'll keep fighting. Yep. As long as you keep fighting Sawyer.

SPEAKER_03 17:33

You just keep showing me that you, you know, that you want to be here and progress is progress, no matter how little. Yeah. You know, like I'm I'm with you, man. Like, I'll just just show me. You know, like he can't say yes or no, and it's just like I don't want to do something that against what what what he wants or what's best, you know?

SPEAKER_05 17:56

Right. And so how many days were you in the hospital before you were released with Sawyer? Or is it was there anything else that went on in the hospital like in those days that you know we had had the doctors, we had multiple meetings with the doctors.

SPEAKER_03 18:11

You have a lot of meetings like that when you have a child like Sawyer in the NICU and um like progress reports kind of thing. Um, and I remember when the doctor said, like, you know, if we take him off the breathing tube, like the ventilator, and he's breathing, then you need to be prepared to care for him as he is. It was kind of like I could tell that he was implying, like, look, you could let him go, like let him let him pass away, or you're stuck with whatever he is on the other side of this. So it's like let him go or embrace this unknown that could be really it's been really challenging. Yeah. But like just the unknown. And it was kind of like he was giving us an out, is what it felt like.

SPEAKER_05 19:04

Which is which is probably exactly what he was doing. Yeah. Like this is gonna be hard. It's gonna be really hard.

SPEAKER_01 19:10

Yeah, but to be fair, that's probably really hard for a doctor to say. Yeah. How did you receive that?

SPEAKER_03 19:16

I I was not. I know I got in so many little arguments with like the nurses and doctors up there. It was just, it's I mean, you have so many emotions, and like you just had a baby, and like all the hormones with that, plus the trauma of what just happened and trying to like come to grips with like what is even happening? What am I supposed to do? What's going on with him?

SPEAKER_01 19:38

Um in hindsight, do you look back and go? I wish he'd never said that, or do you actually appreciate that they they had this conversation with him?

SPEAKER_03 19:48

I I I do appreciate that doctor. He was very real and just kind of like, I appreciate like I need somebody to be direct, yeah. Um, but somewhat polite when they do it. Um but he did say it, and to me, it came off like I'm a pretty determined person, like a challenge of just he's just like he made me feel like he didn't think I could do it. Um and I was like, okay, well, I'll show you. You're just as much of a fighter as Sawyer. Yeah, he gets it from somebody, I suppose, you know.

SPEAKER_05 20:17

So you get and I'm I'm looking at the at the at the story. You wrote a beautiful story, and so I'm referencing this thinking like it talks about how you were fully prepared to experience like because you were in there for how how many months? He was in there for three months, and so you're preparing to possibly take him home or possibly live these last few months with him. Yeah, it was I didn't know how long he was gonna make it. They take the tube out and he started breathing on his own. Yeah.

SPEAKER_03 20:49

So what like I was like, all right, like he's doing it. You know, I'm like, maybe this means like he can breathe on his own. Like, what else can he do? Because with the brain injury, it's just like it's so wild, like where your injury is and how severe it is, what that affects in your body.

SPEAKER_05 21:06

Yeah.

SPEAKER_03 21:06

And it's just like, hey, maybe you know what? He might be able to walk, he might be able to talk. Like, let's just see what how this goes, where this goes. Like it it gave me a little more hope, you know.

SPEAKER_05 21:17

So there's no diagnosis because they can't do like he's just a little guy. So they're they haven't done an M MRI or anything yet.

SPEAKER_03 21:25

Yep. After they warmed him up, um, they did an MRI to see how extensive the brain damage was. And um severe. Yes. Severe.

SPEAKER_05 21:34

Yeah. And it it's like this long medical, long medical term. It blows my mind how long these these terms on. But ultimately, it comes down with the lack of oxygen, restricting blood flow and it is affecting the brain. And they told you after the MRI that he would never walk, talk, cry, laugh, have no memory, wouldn't know who you were as his mom. Suffer seizures, uh eat by mouth, hear or see. Yeah. Everything. Okay, tell me what you're thinking in that moment.

SPEAKER_03 22:10

Oh, that was I just it was devastating all over again. It was just like one blow after another. It just kept, you know, we just couldn't seem to get good news or like any sort of hope from medical professionals. It was just like all bad. Just always all bad. Um and yeah, I just couldn't believe that that's what was happening, that he wouldn't ever be able to do those things. And so after hearing the neurologist say, hey, he's his his brain injury is so severe, he is gonna be like nothing. Like you're not, he's not gonna know you. And that hurt me the most. I'm like, he's not gonna know his mom. Like I it's hard to grasp that. Um, and so that kind of sent me into a spiral of just thinking about all the things he would never be able to do and like mourning that. Um, I try to explain to my family that I'm like, I know that my child is still here, I know that Sawyer is still here, but I'm mourning the loss of a typical child.

SPEAKER_05 23:10

Yeah, yeah. The walking, the playing, throwing a ball, all the things that you envisioned as he's in your womb. Yeah.

SPEAKER_03 23:18

I mean, the like you just naturally start planning those things, like, oh, I can't wait until he says mom, or like gives me a hug, or laughs, or smiles, or any of those things. And so I just got really hooked on all the things he would be able to do. And that was kind of a yeah, vicious cycle. Yeah.

SPEAKER_01 23:34

How long did that last?

SPEAKER_03 23:36

Ooh, um We talk in months.

SPEAKER_01 23:39

Months. Yeah.

SPEAKER_03 23:40

Yeah. Yeah. Really dark some days.

SPEAKER_05 23:43

Yeah. Mm-hmm. Well, and not only are you having to go through and still today. I mean, Desiree, there's still you and I sat and had a campfire together for hours and talked about all the things. And it's like there's still so many things you're mourning, yet still. Right. I mean, every year is different. Every chapter, every now he's going to school, and yet at school, you know, but then there's the beauty, beautiful things that come out of it. So it's neat to see that even though it's super hard, like you really are finding beauty in so many of the little things that you know, so you your appreciation for life and little things is far beyond a lot of us, right? Yeah. Um, so you go after everything, after like all that time in the hospital, you go home with Sawyer. And as a parent, I'm like, man, you go home with a perfect little kid.

SPEAKER_03 24:39

You're like, you trust me with this part? Like, I'm supposed to know what to do.

SPEAKER_05 24:42

Yeah. And yet you're going home with a little guy who has an eating tube, right? He had an eating tube. Yeah, feeding tube. Yep. Feeding feeding tube. And like there was really no instructions.

SPEAKER_03 24:55

None. I mean, I I had to stay in the hospital for I think it was like 24 hours or 48 and just prove that I knew how to administer medications and do his food and like make the the recipe of his food and like the rates and his oxygen levels, and like before they'd let you take him, you had to prove that you could take as a mom, like being micromanaged and like, oh, does she really know how to take care of this child? And like checking, like getting their approval. Like, yes, she seems like a fit mother. Like, yeah, she's she's got all together.

SPEAKER_05 25:30

Because you had to.

SPEAKER_03 25:33

Yeah, right.

SPEAKER_05 25:33

Yeah, nobody else is gonna do it. I mean, yeah, I want to take my baby home. So your determination to like, let's get out of here. Yeah.

SPEAKER_03 25:41

I was just so motivated to get home. I'm like, just let me see. I know how to do everything. Like, just give me my child.

SPEAKER_05 25:47

Were you were I mean, what was the fear factor?

SPEAKER_03 25:50

Like really high. It was just like, I'm like, he's gonna stop breathing, you know, because he had like he had um it's called a strider. Um, so it just would sound like really, really loud breathing, almost like snoring, but he'd be awake. Um, so it's like a floppy airway. Um, and sometimes it would just kind of kind of stick shut, and then he would kind of cough or you know, get it open again. And I'm like, I don't know what's going on. I'm not a nurse, I have no medical background whatsoever. Like, I'm a plant lady, not like healthcare. Like that is not my thing. Um, I stayed up for so many nights just watching him sleep, like just to make sure like he was still breathing and still awake and like yeah, it was terrifying.

SPEAKER_05 26:36

And to think like you swaddle this little baby, you have a baby in your arms, and it was different because you really couldn't like swaddle, swaddle him because he had so he had tubes and different things, but like we're scared to hurt the babies who aren't don't have the tubes and all the things, you know. And so it's like to have like, did you have help? Did you have people? Because I just think about that's all I needed and wanted when I first came home. I was like, I just need people to tell me that I'm like this is gonna be okay. Because you're not sleeping, you're not, but yet yours was to a whole nother level. Yeah. So did you have people stepping in? Medical journey?

SPEAKER_03 27:17

No medical care. Um, yeah, that was a really dark time. Um, my family were kind of don't have the best relationship. Um, and I was going through a lot, um, emotionally, mentally, like super depressed. Um, and I know that I wasn't the easiest person to be around with all of that. Um, and so a lot of people I think shied away.

SPEAKER_04 27:44

Okay.

SPEAKER_03 27:45

Um, which I don't blame them. Hindsight, like it's hard to want to help somebody when you know they're obviously struggling, but also seeing on the other side, like, hey, like she's hurting a lot. Like, let's just like insert ourselves and like wrap our arms around her and and this new baby. I wish. I wish. Yeah. I wish that that would have been. You wish that people would have been Yeah, just like more stubborn and like show that they want to help or like learn to take care of Sawyer because that was the other drawback is people are like, Oh, I don't want to hurt him. I don't want to, you know, they were scared of him. And, you know, I was scared too. Like, I didn't know how to take care of him, but what do you wish they would have said specifically?

SPEAKER_01 28:25

Like, hey, here I'm on standby, you need my help. Hey, I'm here, just text me more passive or more active.

SPEAKER_03 28:33

I would have, I think somebody where I was at with everything, like, hey, I'm coming by your house on Tuesday, like I'm bringing you food, um, I'm gonna let you shower, and I'm gonna sit with Sawyer, and like you can help show me what needs to be done with him. Like, just the willingness to learn and maybe just be uncomfortable, like with this child that has a disability. Um that goes a long way.

SPEAKER_01 29:01

And you think you would have been receptive of that?

SPEAKER_03 29:03

Yeah, I think so.

SPEAKER_01 29:04

And if you weren't, what would be your advice to someone? If you pushed back and said, Yeah, I'm good, now I'm good. What would you be your advice to someone?

SPEAKER_03 29:12

Hmm. Even just like meals. Meals were good. Like maybe not so much like having to talk to somebody that I know is really hard for me too, because I didn't have any energy to give to anybody. So I'm like, I don't want to have to have a conversation, I don't want to have to have anybody see me. I just like just saying, like, hey, I'm gonna just put food on your front door. Yeah. Or like, you know, just that would have been just food.

SPEAKER_00 29:37

Food helps, um, like gift cards or like just texts too or messages, like saying instead of not so much Taco Bell.

SPEAKER_03 29:46

Yeah, more lasagna.

SPEAKER_00 29:47

Nothing against Taco Bell.

SPEAKER_03 29:48

Yeah.

SPEAKER_00 29:49

But more lasagna, though.

SPEAKER_05 29:51

Yeah, more lasagna. Yeah. So I what I'm hearing you say, and I love this because for all of our listeners, please pay attention to this. Our society is so careful, overly cautious, don't want to step on people's toes, um, don't want to offend. Uh, and I get that. I get that. But from a mother who went through something very traumatic, she is saying, I would have given anything to have even a stranger, somebody who has empathy and love and cares enough to knock on the door and say, I don't know what you got going on. Yeah, Desiree, but I am here for you. Right. And you probably would have hit your, you would have probably fallen and hit hit the floor. And like, yeah, thank you.

SPEAKER_03 30:44

Yeah. Like, thank you. Like just in just like thinking of that when you're saying that, like, man, what I would have done for just like somebody to come and just sit in my house or with me and just like let me cry. Like, just be there in the hard stuff.

SPEAKER_05 31:00

Desiree, I owe you an apology because I could have been one of those people. Like, I'm thinking back to when I saw you at the parade. Yeah. And I could have so for all that time, could have been that person for you. So I'm so sorry.

SPEAKER_03 31:16

It's okay. You don't know what you don't know. But moving forward now, if you're able to cross paths with somebody else that's going through something, like even just a hug, even just like, man, what how is your day today? Like, I'm here for it. Like, you can cry, you don't need to not cry. Like, I will embrace those tears. Like, just let it out. Yeah. You know, because I feel like so many people are quick to be like, oh, don't cry. You know, we can fix it. Like, and I got that a lot. And so it was just like I was never able to let it out and feel that and be sad. I had so many people just like, you should be happy. Like, be happy he's still alive. Like, he's not even supposed to live, but he's here. And it's just like, yeah, but like, look at all these things that he needs to stay alive and like take away from all that. Yeah, I'm like, I can be, you know, sad and happy. And it's just like, yeah, just allowing those things to kind of all exist together. It doesn't have to be just happy or just sad.

unknown 32:15

Yeah.

SPEAKER_03 32:15

Yeah.

SPEAKER_01 32:16

So just saying, just being in the hands of feet of Jesus. You know, I can just picture Jesus with a casserole in his hands and say, Here.

SPEAKER_03 32:28

Here you go.

SPEAKER_01 32:28

Here you go. Here you go. Have a nice day.

SPEAKER_05 32:30

Not Taco Bell. I can see him being like, just in the questions of what can I do for you? Your answer is I don't know. Sometimes I don't know. And so to really press in and ask God, like, God, what does Desiree need? He'll answer. Like he knows your needs, he knows all of our needs before we know our needs. Right. And so to not ask those very simple, meaningful yet questions, like just do something. Like you said, just show up, say hi, sit here. Just don't like I don't ignore those prompts from the Lord.

SPEAKER_01 33:13

Yeah. That may not make sense. Right. Follow through on those.

SPEAKER_05 33:16

There's a reason. So how many years did you spend with Desiree and Sawyer? Just the two of you. Oh, it was a solid year.

unknown 33:28

Okay.

SPEAKER_05 33:28

Yeah.

SPEAKER_03 33:29

And then Amos. Yep. Where did And then and then in comes Amos, my husband, not your husband. My husband. Thank you, honey.

SPEAKER_04 33:41

Thank you, man.

SPEAKER_03 33:42

And Sawyer's, you know, he was in the NICU for three months. Um, and then uh I brought him home. So, like what those other nine months? Um, it was just Sawyer and I at the house, you know, I was just trying to figure out how to take care of this really fragile child, and he has a lot of chronic lung problems um because he's not able to um swallow or cough effectively. Um, so then that would create a lot of disease in his lungs and he would get sick often. So we were, they call it frequent flyers in the PICQ. Okay. Um, so we were in and out of there practically every other month. Um, and he was always very critical because he was still, you know, a few months old baby. Um, so they would put him, put him on the ventilator, and then I'd have the end-of-life conversation almost every other month. And it just it wears you down. Um very depressing, very dark. Um, and I did that by myself. Um, spent all my time up there just Sawyer and I. Are you working sometimes? I was I was unable to work. Um, so I was just uh I they had after Sawyer is born, um a gym of ours did a fundraiser. So I was using that money to, you know, pay my bills and be able to stay at home with Sawyer because I was hoping in that he would get better. You know. Um, so that's kind of how I got by and um on the financial the financial piece. Yep, on the financial piece.

SPEAKER_05 35:19

At the gym is where you met Amos before Sawyer. And so he knew you were Sawyer, right? Like, but didn't you in like No, I met him after I had Sawyer. Yep.

SPEAKER_03 35:31

Okay, yep. He had heard about us that heard it was that gym um put on a fundraiser for us because I was a member there. And so he had heard about us. He's like, Oh yeah, I've I've heard about Desiree and Sawyer. And um Yeah, it was it was a total, total god thing. Um, after going through those several months of being in the PQ and doing that life by myself. Um it it gets very lonely. Um it's extremely lonely. Um, and I was like, you know, nobody's nobody's gonna want to sign up for a single mom with a child with like who's super medically complex and has all these different disabilities. And I was like, I get it. You know, I'll just be single until I'm 50, 40, you know, 50, 60. You know, I was like, it's gonna be swearing hard to do in life. And wrong. Yeah. And I uh I remember Sawyer was in the hospital and I was going home just to like just take a break. And I sat in the driveway and I was just praying to God. And I was just like, look, like I know that this is not probably the lifestyle that a lot of guys would sign up for, and I am not like actively looking, like my attention is on Sawyer and you. Like whenever you feel like it's right for this man to enter our life, like I trust you. Um, and I fully trust like when that timing is. Um, I just remember I was just like crying. I was just like, I'm so lonely, I just need help. And um, and you know, the days went by and um I was able like Sawyer came out of the hospital after that stay, and I went back to the gym and I had just saw Amos in passing, and I was like, you know, hey, you know, like I was just like blinders on, like I am not gonna trust my judgment, you know, like I'm gonna just let God like put this man our life. And um we I introduced myself and he introduced him himself, and um that was pretty much it. You know, like I was just like we both still kind of joke about it now. Like I had no interest, like when I first met you, and uh, you know, I I I added him on him on Facebook, and um he I think he had messaged me um not long after I added him, and I was just struggling mentally with a lot of things, um, that I'm not a good mom and that I could do better, and just really doubting my abilities with having a child like Sawyer. That was probably just Satan getting in my head. Yeah, you know, he's really good at that. And not even kidding you, like minutes after I'm like having this conversation, and it was with one of my son's night nurses that I'm I was sharing this, like I'm just really struggling with this. My phone goes off, like I got a message on Facebook, and I look at it and it was Amos, and he's like, I'm I just have he's like, I know this is super random, um, but I just have to tell you this. It's really on my heart that I just want to let you know that you're a really good mom. I and it just like still gives me goosebumps because I was like, that is totally God, like working through him, and just like like seriously, it just makes me tear up and it's just it's so beautiful. Um, and that just kind of was like the start of like just conversating back and forth and just like learning who each other are like who we are, and like, hey, you want to like meet up and like go to church and like get lunch and you know, and it just kind of escalated from there, and it was just like when you know, you know.

SPEAKER_05 39:00

Yeah, what an incredible person we've met, Amos, and he really just he has a heart for you and those boys like no other. He does it's amazing to you know, you're right, because what guy is really gonna enter into knowing this is the life forever? Like, I love you, but guess what? We're a pair, yeah, and this is what you're getting into, and I'm sure that you are constantly saying that to him. I was.

SPEAKER_03 39:26

I was like, you know me, right? Like, you know that Sawyer and I are a package deal, like he is he is my everything, you know? And and Amos was like, I yeah, I know. I'm like, you're an amazing mom. Like, and he he he wanted to meet Sawyer and he met Sawyer and he just was like, Yeah, can I hold him? I was like, What? Like, you want to hold him? Absolutely, yeah. There's so many people who are just scared to even touch Sawyer's arm, and he was like, Can I sit with him? Like, let's pick him up. And I'm like, Let's go for it. And so, like, that was me, like that really helped me to kind of like lower my like guard, you know, with being like so protective and cautious that I'm like, okay, he's he's in this for for both of us. Jumped in. Yeah, just jumped right in.

SPEAKER_01 40:09

Have you two ever talked about things that happened in his past that maybe that prepared him for your guys' relationship?

SPEAKER_03 40:18

Not specifically. Um, I know that he he worked at um like a children's home with um more like behavioral kids, but he's just so patient and so calm and just exactly what you needed. Yep. Exactly. Just like God knows. Yeah, God knows. You know, you're good. He pretty much knows everything. He's right. Pretty much the creator of the universe.

SPEAKER_05 40:43

Like so you guys get married and he moves in and you get pregnant. Uh uh, you I know that our time is is it's coming up here. So you have Enzo and you enter that hospital pregnant, and the trust you had to have, and the mindset you had to go into that hospital to have. I've heard from so many moms that when that first pregnancy or when a pregnancy is really troublesome and things just don't go how you had planned. It's like you walk in with that fear. Yeah. Um, but everything went perfect, right? With Enzo.

SPEAKER_03 41:30

It went yeah, it was wild. He's great. He's like, what was he, nine pounds, three ounces. He was yeah, he was a hefty boy. But yeah, like medical birth trauma, it's it's a real real thing. Like I had many breakdowns. Like I was just in tears with the nurses, and like they were super understanding and were very like good at reassuring me. Like, we get it, we get it. Like, we're here for you, like nothing's gonna happen. And I'm like, I don't believe you. Like, but okay. And you know, everything went really well with with Enzo, and now I have a typical child and a child with a severe disability. And Enzo is so cute. Thank you.

SPEAKER_05 42:11

He is so cute. I'm kind of biased, but like he's super cute. One, um, there's two more things that we need to cover. Uh, thank you for sharing all of that because that is I've seen Sawyer. I've man, he's just a beautiful, bright boy. He's got like even though he's like you said, he is deaf and you said blind, legally blind, legally blind, yep, and is unable. I mean, we'll have pay well, we'll have some pictures that you had sent so people, but it's like Sawyer, he he knows you, he knows your laughter. He that's a beautiful thing that I love about the whole thing is like he knows Desiree. He knows his mama.

SPEAKER_01 42:52

He's got moods, I remember what you're saying.

SPEAKER_03 42:53

Moods, moods, yeah. Yes, he's like happy or really mad. Like, yeah, he can and you can see it all over his face when he's happy or mad.

SPEAKER_01 43:02

And um, yeah, he's a mama's boy, which you know, which is just not it's not what the doctors had said yeah, yeah, years before.

SPEAKER_03 43:10

You know, that he wouldn't know me or remember me.

unknown 43:12

Right.

SPEAKER_05 43:12

And so that's a miracle all in itself, right? Like the soy Sawyer's seven years old. And yes, it is a lot of work. You and I have talked about the day in, day out, 24-7. Um one one thing that I love is that in the state of Minnesota, they they will pay the mom, right? To to be able to stay home 24-7 with, and I think that is one of the most beautiful things when people complain about taxes and all that stuff. Like that helped me as a taxpayer go, dang right. Yeah. I love that my friend Desiree gets to stay home with her beautiful little Sawyer. I'll pay whatever tax you need in order for that to continue.

SPEAKER_03 43:51

Like that's so shout out to that. It's it's a huge blessing because if we didn't if that wasn't an option, I don't know. Yeah, I don't, it's it's It's so sad because you know moms know how to take care of their children the best. Um, and that there's other families in that situation that are kind of forced to like just live off of social security or put their child in a group home. Like, and it's hard. You're like stuck between a rock and a hard place, like whatever decision you make is just not ideal.

SPEAKER_05 44:19

Sawyer goes to LifeScape. He does, he goes to a um specialty school. Specialty school. That's a huge blessing. Like, I guess.

SPEAKER_03 44:28

Yeah, I never thought that I would see the day, and it's crazy.

SPEAKER_05 44:31

Yeah. So he's going to school. And um, one thing I want to touch base or touch on before we close out here is when we were at church that day, my three little girls were asking me questions. They were looking at Sawyer and saying, What's wrong with him? Like, and I remember one of my girls going up, and as a mom, I was like, do is it okay to point? Is it not point, but is it okay to ask those questions? That is it'll is it okay to approach you as the mom Desiree for those that are curious? Because you don't, you said, I don't want moms to shush their children and tell them not to talk and not to say anything, not to point them out. Not you want kids to be curious. Is that correct? Like, okay.

SPEAKER_03 45:19

So kids' curiosity is just so pure and genuine. Like they just want to know, like, yes, he is different. He's in a wheelchair and it's a lime green wheelchair. Like that draws attention in itself. Yeah. Um, yeah, and kids are just they're just curious. Um, yeah, it's and I want my child to be recognized just like anybody else's child. Like, what mom isn't proud to like talk about their child? Like, yeah, I will talk about him and like show him off. And um love answering little kids or kids' questions, adults' questions. Um, because like if you shush your child, like they're not gonna learn or ever have the opportunity to learn or be around anybody who's different than them. Right. Like you're not you're not helping your child by shushing them. Yeah.

SPEAKER_01 46:00

This the the thing that a parent's scared of is um a child saying something wrong.

SPEAKER_03 46:04

Right.

SPEAKER_01 46:05

Something insult perhaps insulting. Right. What do what do you say to that mom?

SPEAKER_03 46:09

I would say they're just kids. You know, like I get kids, they're just they have no filter, you know. And like, I've had children, what's wrong with him? I'm like, well, he has a brain injury. And I don't even think they're not trying to be mean. Like they're just trying to get their point across. Like, I just want this question answered.

SPEAKER_05 46:25

They really, they're so matter-of-fact. Like, why is his mouth open? Yeah. I remember Abby asking me that, why is his mouth open? Well, let me tell you. Yeah. Like, I love being able, but when you see anybody with disabilities or in a wheelchair or any of that, you really do shy away from asking what happened. Yeah. But it there's a lot that's even though I'm not in a wheelchair or I don't, I have my own, you know, like we all have a story. So that's a big reason why I love being able to ask those curious questions, as long as they come with kindness and love. Exactly.

SPEAKER_03 46:58

And like, and if you fumble over your words, like I get it. Like it's uncomfortable for a lot of people. They're like, I don't want to offend you, or or anything. And it's like, I would just rather somebody be like, look, I don't know how to ask this and I don't want to offend you, but like start with that.

SPEAKER_04 47:11

Yep.

SPEAKER_03 47:12

You know, or just point out something like, oh, I really like his shoes. Like, it doesn't have to be just about his disability. Like, let's find some common ground. You know, it's like, oh, do you like dinosaurs? Like Sawyer really likes dinosaurs. Or like, what's your favorite color? His favorite color is this, or like, you know, like what kind of book do you like? He likes that book. Like, it gives an opportunity to like, you know, help the kids feel like they're not so different.

SPEAKER_01 47:32

Really likes dinosaurs. Yeah. You just I glanced over that, but I think that's huge.

SPEAKER_03 47:37

Yeah. He likes different things, you know, he has, he really likes shiny things. Like, he can't see as well. You know, he's legally blind, but he he enjoys shiny things. He enjoys sparkly things. He loves being outside. Like he loves being in water. He loves music. He loves his little brother. Like it's just I could go on. Yeah. And it's amazing because he was never supposed to do, he was never supposed to be here. Yeah. And he's not better.

unknown 47:59

Yeah.

SPEAKER_05 48:00

So what's your advice for parents? And then I want to talk about the GoFundMe parents quickly. What they're in the midst right now of some of the toughest either decisions or a walk in life with their children of tragedy or just okay.

SPEAKER_03 48:20

Well, first of all, continue to pray about it. Even if you're mad at God. I yelled and I cried and I screamed at God. And that's okay. He can take it. He can. Right? Like just have it out. And he's still gonna be there. Like no matter what. Um, so that's a start. It's okay to be able to do that. Let all the anger out and the sadness, and like you can take it.

SPEAKER_05 48:44

Yeah, don't stuff it, right? Right, don't stuff right all that you're feeling, it has to come out. Right.

SPEAKER_01 48:49

Anger in itself is not a sin. Jesus got Jesus got angry. It's okay to be angry at some things. Yeah.

SPEAKER_03 48:56

Um start there. And one of my my friend's mom, she told me she's like, you just have to take it one minute, one hour, one day at a time. And like that, like was burned into my like thoughts because I would just get so like I would spin out of control with like, oh, but when you know, when we get them home, it's gonna be this and this. And it just like kept going. And it was just like, look, like if I can make it through the next 10 minutes, like accomplishment. All right, let's make it through 30 minutes, accomplishment. Like, we got an hour down. Like that was where I was at with what was going on in like just a crazy, like a couple months, well, a couple years sometimes, yeah, depending on the situation and what was going on. Yeah, that helped me out a lot. And maybe ask for help if you can. Um, sometimes like the mental load is just too much. You don't have the energy to ask. Okay. Um, maybe find one friend to just be like, look, I'm really struggling and I need you to like reach out to people.

SPEAKER_05 49:55

Yeah.

SPEAKER_03 49:55

Um, you know, like have somebody do the reaching out. Like, I can just have to get find like one person that you're able to confide in, be like, look, be my be my voice for these other people and like be the filter or the buffer. So not everybody's coming to that parent or person that's dealing with all this stuff with their child because it's so much.

SPEAKER_05 50:13

Find the one, yeah. Yeah. Find the one person that you trust with it all that you can. Okay. That's on that's like a project manager. So something that has recently come up that you and I talked about was Sawyer is in a wheelchair that's like 150 pounds. And in order for Sawyer to live a life like a seven-year-old boy, and for you and your family to be able to go on hikes, to walk in the grass, to walk on gravel, to just not be in this huge, heavy wheelchair. Um, it would mean the world to your family if you had this specific kind of, it's not even a stroller, it's like a trike or a it's like an altering stroller is kind of yeah, but it's like a three-wheel stroller that can move through. Like I think if we went and had our stroller and tried to try to push our babies through things with those terrible four-wheeled. Like a shopping cart wheels or something. Yeah. Yeah, like that'd been awful. So though we had a three-wheel thing for the kids too, and it was fabulous. Uphill, downhill, all the things. And so, in order for that to happen, this wheelchair is no small price tag because it has to come with all his equipment has to get hooked up and all the things. Right. And so a friend of a friend and game plan for hope with Trenton Bass, who Trenton was on our podcast. I think it's like episode two or three. He's on there. Um, his mom, Missy, and I have decided that we would really love to help with this. And we know that there's a lot of people out there that will hear your story and will say, gosh, how can I help?

SPEAKER_04 52:02

Yeah.

SPEAKER_05 52:02

Well, this stroller would literally change your guys' lives.

SPEAKER_03 52:05

We'd get to be like a family unit.

SPEAKER_05 52:08

Like we get to do something together, all of us instead of apart. Versus Enzo and Amos going because you to the park because he can't go in his wheelchair.

SPEAKER_03 52:18

He can't go anywhere that's not just straight pavement or asphalt.

SPEAKER_05 52:22

Well, we're changing that. Um, some friends that have kind of decided that it's just we want this for you and your family. And so I know that there was a VBS group that has raised almost $2,000 and Game Plan for Hope would like to give some. And um, there's just a few other avenues. And so, as friends, we are gonna have a GoFundMe, or you're putting together a GoFundMe page, and it's gonna be tied to this, tied to this podcast. And our prayer is that the funds will be raised, and I have no doubt that they will be. Like I just know that you're gonna have this trike, and I can't wait. I just can't wait to see you guys walking around. Um, and so we are shy of half the cost, and we're I think it's 8,000 or so the total, which is it's pricey, but I'm like, man, it that's only $8,000 for someone's life to be dramatic dramatically changed. So it's gonna happen. And I'm pumped that it's that I that God is gonna provide. He just I know he will. And so if you're listening to this and you know of avenues or grants, funds, whatever, if you want to give the GoFundMe, please click it. And um let's get this trike for Desiree's family and for Sawyer. I think that would be just beautiful. It would be. Um, is there any any last things that uh I I'm just so grateful. I I'm just happy to be here sharing about Sawyer. I could talk about all day. Yes, yes. And we will have um pictures.

SPEAKER_03 54:03

If you have questions, is it okay to uh they can reach out to us and I'll connect them with you, or if you have a just a or if they know if anybody knows a family that's going through something similar, like I I've always been super open to helping other moms or just being a sounding board, or you know, like I know it's hard and just having somebody who gets it is it's really helpful.

SPEAKER_05 54:26

You're so approachable, so relatable. You're thank you. You've quickly become a uh a dear friend of mine, and I'm really grateful that you're in my life. Well, I'm grateful that you guys are in my life. Well, it's forever. It's a forever thing. Well, thank you for being here and sharing your story. Thank you. Yeah, thanks so much. Thanks.