Through a Father's Eyes: Fear, Faith, and the Future

Hey y’all! Welcome back to Holy Ground Parenting. I’m so glad you’re here.

This week’s episode is a little different because I’m welcoming my very first guest — my husband, Stephen.

Over the past few episodes, you’ve heard me share my heart about our journey through infertility, the NICU, autism, and the fears that can come with raising a child with special needs. But this journey didn’t just shape me — it shaped Stephen too.

In this conversation, Stephen shares what special needs parenting has looked like through a father’s eyes. We talk about the fears dads sometimes carry quietly, the responsibility that comes with loving and protecting a child with extra needs, and what it looks like to trust God with the future when there are still so many unknowns.

If you’re a parent walking this road — especially a dad who may not always say these things out loud — I hope this conversation reminds you that you’re not alone.

Transcript

SPEAKER_01 0:03

Hey back to holy groundparenting. I'm your host, Marie Kennedy. I'm really glad you're here. Today's episode is very special to me because I finally get to introduce y'all to my husband, Stephen. And it's really weird to call to call you Steven. So if I say hey, baby, or thanks, baby, that's literally what we call each other all the time. So like if we say our real names like Stephen or Marie to each other, we usually like look at each other like, why did you just call me Marie? Why did you just call me Steven? Uh but if you've listened to the past few episodes and you've heard me talk um a lot about our journey with Evie and navigating special needs as a family. And Steven's been walking every step of that with me. And honestly, I've shared a lot of my own perspective so far. So I thought it was really important to you guys to hear from him too, especially for those dads out there who might be listening. So Steven, okay, babe, baby. Welcome to Holy Ground Parenting.

SPEAKER_02 1:24

I'm really excited to be here.

SPEAKER_01 1:27

You sound excited. Don't worry, I promise I'm not gonna make it too painful for you. Uh so I just thought that we would start off by I just gonna let you introduce yourself and maybe talk a little bit about or really whatever you do, just give your own perspective. Uh, and you can go as far back as you want to. Uh, and then I do have some questions after that. Uh, but if you just take it away.

SPEAKER_02 2:01

All right. So I'll start with Evie's birth.

SPEAKER_00 2:06

Okay.

SPEAKER_02 2:07

She was a microprimate.

SPEAKER_00 2:11

She was.

SPEAKER_02 2:13

Um, she was teeny tiny. You could hold her in one hand. It was I didn't even know that was possible, but there you go.

SPEAKER_01 2:22

Yeah, she was like a little baby bird.

SPEAKER_02 2:25

She was.

SPEAKER_00 2:25

Yeah.

SPEAKER_02 2:26

And her skin was like almost red because it was so scary.

SPEAKER_01 2:31

Yeah.

SPEAKER_02 2:32

Yeah.

SPEAKER_01 2:32

Yeah. You want to talk about her birth? What about that night?

SPEAKER_02 2:39

Do you want to talk about the night she was born? Well, I know that I was in the room with you that night. We were waiting for your sister to get there, actually, because she was going to stay with you that night, and I was gonna go home and get some sleep and go to work the next day. And she was running late, thank goodness.

SPEAKER_00 3:04

Yeah.

SPEAKER_02 3:08

And then everything kind of deteriorated pretty rapidly.

SPEAKER_00 3:14

Yeah.

SPEAKER_02 3:15

Um Evie's heart rate was dropping, and they next thing I know, they threw up the rails on the side of the bed and down the hall y'all went. And I was in there just like, whoa, what is going on? This is the craziest moment of my life.

SPEAKER_01 3:42

Yeah, it felt surreal. Like it did not feel like real life.

SPEAKER_02 3:47

I was really worried. I don't know how long it took 'em from the moment you disappeared around the corner to Evie being out. Um but they had all the medication to restart your heart, they told me, sitting there. And they said it took 30 minutes of CPR to get Evie's heart to beat. And I just remember just praying and hoping that y'all would be okay and that we would make it through that that time.

SPEAKER_01 4:37

We did.

SPEAKER_02 4:38

We did, and we were blessed and been blessed ever since.

SPEAKER_01 4:44

Yeah. So we kind of talked about this before recording, but uh do you want to talk about going in and seeing her for the first time?

SPEAKER_02 4:58

So you were unable to go see her at the time. You just had emergency surgery.

SPEAKER_00 5:06

Right.

SPEAKER_02 5:08

And I went back there and saw our little baby girl just laying there and teeny tiny. And they let me actually interact with her. Uh stuck my hand out and she she actually grabbed hold of my pinky. Her whole hand was as big as my nail on my pinky. And uh kissed her on the forehead and told her I loved her. And she's been the joy of my days ever since.

SPEAKER_01 5:58

I remember them saying she's feisty. You remember them saying that? Like she's feisty, and we were they were like, that's a good thing, because she needs to be feisty. And she was. You remember like they you remember they kept trying to uh swaddle her like in that thing in the NICU and she kept getting her hands out of it every single time. Yeah, so she's definitely been a feisty little warrior since like day one for sure.

SPEAKER_02 6:36

Yeah, she's still feisty.

SPEAKER_01 6:39

She is. God's definitely got big plans for her because everything that she has been through up until this point, like there he definitely has some some plans for for Evie Roo, huh?

SPEAKER_02 6:58

She I know she never meets a stranger and she's got the biggest heart and brings a smile to anybody's face that meets her.

SPEAKER_01 7:06

Yeah, she is she is very joyful.

SPEAKER_02 7:09

She does bring joy to everyone she meets.

SPEAKER_01 7:12

Yeah, for sure. We better turn down the baby monitor just in case somebody starts crying. I just thought about that.

SPEAKER_02 7:22

50 50.

SPEAKER_01 7:23

Oh okay, so okay, so you talked about the birth. What anything else you want to talk about, like from your perspective before we get into the question part? No. Okay. So do you just want me to ask you the questions and then we'll just go from there?

SPEAKER_02 7:46

That sounds good.

SPEAKER_01 7:47

Okay. Well, do you remember the day that we got Evie's diagnosis or what specifically do you remember most about that?

SPEAKER_02 8:00

Uh remember a sense of relief to know what was going on so then we could you know, try and adjust to to meet her needs and you know under an understanding, good understanding of what was going on.

SPEAKER_01 8:25

Yeah. Uh well so uh okay, so did you expect them to say that she had autism and ADHD, or were you surprised by it?

SPEAKER_02 8:42

Well, as far as the ADHD goes, they you know, whenever she was in the NICU, they actually said, We can give her this shot.

SPEAKER_01 8:55

Right. And if It was the steroids, right?

SPEAKER_02 8:58

Yeah.

SPEAKER_01 8:58

Yeah.

SPEAKER_02 8:59

And they were like, if we give her this shot, like she's probably gonna have ADHD.

SPEAKER_01 9:07

Well, it was like a it was like a steroid protocol. That was are you talking about when she was intubated and like we were kind of getting like maxed out on all of the It was basically like we were either give her this or she made not basically basically gotten to her limit or the the limit on the ventilator settings and they were trying things and it just nothing was working there. It's been like a like a week or so, right? That uh nothing was working, and and she just she wasn't getting any better. And there was a steroid protocol that they could do, and I don't think it was like an actual shot. I think it was just like an IV medicine, right? I don't think it's just like an actual shot. But uh they basically were like, we can do this, but it's probably gonna give her ADHD. I do remember that because we had to sign paperwork.

SPEAKER_02 10:10

But at the time we were like, we don't care. Yeah, we were like, we don't care.

SPEAKER_01 10:15

That's what we were worried about. If she's still breathing, like we'll deal with everything else later. Like, we don't care. We just want to keep her alive.

SPEAKER_00 10:24

Yeah.

SPEAKER_01 10:24

Yeah. Uh but what about the the autism part? Did that surprise you or were you expecting it?

SPEAKER_02 10:34

I wasn't expecting it. I was expecting something.

SPEAKER_00 10:37

Yeah.

SPEAKER_02 10:38

But um I was glad to have I mean, I know you were frantically, you know, searching to try and figure out what was going on and to get to the bottom of it. And I felt like that was bringing you some relief knowing, and then we could move forward with trying to address it and adjust.

SPEAKER_01 11:09

Yeah. Yeah, I feel like I feel uh yeah, I definitely like was spiraling and researching and doing all the things and trying to figure out what was going on. Because we we both knew like there was some communication issues, you know, she obviously, you know, we talk about how smart she is and and all that, and she g and she could read, but she couldn't tell us basic things like I need to go to the potty or I'm hungry or I'm thirsty, you know, like she couldn't tell us like basic things, but she could read a book.

SPEAKER_02 11:50

Yeah, and her like yeah, just overall her communication was lacking for her age.

SPEAKER_00 11:58

Yeah.

SPEAKER_02 11:59

I mean that was that was definitely like a something that has improved greatly.

SPEAKER_01 12:08

Oh my gosh, yes, so much.

SPEAKER_02 12:10

I guess night and day.

SPEAKER_01 12:12

Yeah. So one thing that I know that we've talked about uh is the day that that we got the diagnosis, the the lady calling us. What what do you remember about that? About getting the call from the doctor.

SPEAKER_02 12:28

So she called and when she um gave us the diagnosis, and I was like, okay. She was kind of like, that's kind of strange because usually dads are the ones that are like, no, there this isn't this isn't what's going on, you're like, you know, not my child, yeah, taking that perspective, and I'm just like, you know, it is what it is, you you know Yeah.

SPEAKER_01 13:02

She was kind of surprised at how well you in particular like came to terms with the the diagnosis, I think. Because like you said, she she's not used to the the fathers you know, expecting it. Or not that well not expecting it, but like accepting it. Accepting it, yeah. Yeah, that's what I wanted to say. So do you feel like you had to be strong for for me during that?

SPEAKER_02 13:42

I wouldn't say I had to be strong for you. I was more wanting to be there for you and you know support you and I tried and to be strong for our family every day, but you know, do the best I can uh but it's not you're you're pretty strong on your own.

SPEAKER_01 14:16

Well thanks. Sometimes too strong. Sometimes I'm a little over a little much. Uh well so did her diagnose change how you saw your role as a dad?

SPEAKER_02 14:34

It probably m more so made me uh a protector for her, even more so than just normal. Because now it's you know, you start thinking about, well, if something happens, is she gonna be able to tell me what happened? You know? Yeah. And you know, if she falls and scrapes her knee, and I ask her, what happened to your knee? And she says, She doesn't tell me, or or she says something that I know is not true, you know.

SPEAKER_01 15:13

So she so the reason I'm laughing is because Saturday she literally fell down and scraped her knee and she said, I'm dying, I'm dying, my knee is dead. So yeah, but yeah, no, I totally agree with that because that's definitely been a fear of mine too. Like, what if something were to happen? You know, a kid push her down and or you know, something crazy happens, and would she be able to tell me, you know, and that's still a fear. I mean, like, she's definitely her communication's come a long way for sure, but she still does have some communication delays, you know. Would you agree?

SPEAKER_02 16:01

I would agree. I mean, she's definitely made massive improvements, but there there still are things where she she'll kind of get, I don't know, off topic with it.

SPEAKER_00 16:15

Yeah, it's like she Yeah, yeah.

SPEAKER_01 16:19

It's like she will say something that's not in the same context, right?

SPEAKER_02 16:27

Yeah, yeah like something about a TV show or something.

SPEAKER_01 16:33

Yeah, yeah. It's like she'll it's like I feel like she has like a memory or something that she'll attach to something. Like if she falls down and it makes her think about a TV show and we say, Evie, did you hurt your knee? And she'll start talking about that TV show instead of talking about her knee. Does that make sense?

SPEAKER_02 17:06

Yeah, that makes sense. And then it's it's also kind of fun not to watch her like when she's done something like that to her knees or something, try and get up and off the couch. She looks like a little grandma.

SPEAKER_01 17:20

She does look like a little grandma. Bless her, bless her bones. She bless her. She did get so upset Saturday whenever she fell down. And and it was because we were walking on the reason like she had a scrape on her knee is because we were walking on concrete whenever she fell and she was running and she was in some shoes that she probably shouldn't have been wearing for that, just because they were like little slip-on like shoes, and she tripped and fell. Bless her. Well, did her diagnosis like did it make you feel pressure or make you did it change how you felt about or what you think about working or money or planning when you think about the future, did it change how you think about the future basically?

SPEAKER_02 18:24

It did to an extent, and like basically work-wise, I mean, I've had opportunities to go some different directions, but it would be more time consuming and I wouldn't be able to be as be at home as much as I would much as I like to, as far as like now I've got it pretty good as far as what I do work-wise for being home.

SPEAKER_00 18:51

Yeah.

SPEAKER_02 18:52

So that's definitely been a a factor, and then more trying to set up things for long term financially, especially for her, to be able to have have that support whenever we're not here anymore.

SPEAKER_01 19:17

Yeah. Yeah, that's one thing that I've talked about on the podcast is just the fear that can come with thinking about the future and just you know, worrying, like, would she get to do all the things that you would normally think of? Graduate high school, go to college, get married. And she may she may get to do all of those things. I hope she does. Yeah, I hope she gets to do whatever she wants to do. And I think that there are no limits to what she can do. I think if she wanted to do all of those things, I think that she definitely could. I think it would take some extra work. Uh, but I definitely think that she could go there. And and just seeing how much progress she's made over the past three years. I mean, can you imagine from three years ago to now, like, you know, three years ago, did you think that she would be talking like she is now?

SPEAKER_02 20:21

I was hopeful, but I'm I'm really glad because now she knows full sentences, you can have a conversation. Um sometimes when we're riding to school, uh I'll do like a little theme song to Jurassic Park if she's not paying attention, and I'll make like a fart noise and she'll say, No, daddy, not Jurassic Fart, Jurassic Park. Yeah. And then I'll roar like a dinosaur, and she'll be like, Yeah, that one.

unknown 20:59

Yeah.

SPEAKER_01 21:00

Yeah. She definitely likes her routine for sure.

SPEAKER_02 21:04

She does. She's very on point on schedule.

SPEAKER_01 21:09

Yeah.

SPEAKER_02 21:10

She's you're almost at a clock by her by the time she gets up to eat breakfast every morning.

SPEAKER_01 21:16

For real. I wish it was a little later sometime.

SPEAKER_02 21:19

Yeah. Give us one more hour on the weekend, please.

SPEAKER_01 21:22

Yeah, for real. Well, uh, do you ever think about what would happen if something happened to us?

SPEAKER_02 21:30

I put a lot of weight on Jack for that one, our son. Like I'm hope that they're both old enough at that point where they can semi bend for themselves. And but yeah, he's I'm putting a lot on his shoulders. He don't know yet.

SPEAKER_01 21:50

Poor Jack. Well, one thing about Jack and Jack's story is his birth story was a whole lot different than Evie's for sure. It was still on a Nikus day, but it was his the whole everything about his birth was a lot more calm, wouldn't you say yeah it was uh plan plan births are way better than emergency births.

SPEAKER_02 22:24

And I actually got to be in there with you this time.

SPEAKER_01 22:26

Yeah you got to be in there and that was nice. Which the first time I don't really remember anything. I mean all I really remember is like jumping on the table and her like throwing a bottle of beta down on my stomach and telling me to lay down. That was and I remember the uh the CRNA guy putting the oxygen over my face like right before they intubated me. That's pretty much it.

SPEAKER_02 22:50

Well I actually got the privilege of being in there for his birth.

SPEAKER_01 22:54

Yes which was awesome. And I remember they were like don't look below the sheet don't look past the curtain.

SPEAKER_02 23:03

Yeah that was crazy. He was feisty too.

SPEAKER_01 23:07

Yeah yeah I remember my biggest one of my biggest fears going in to Jack's birth for you know versus Edie's birth obviously we everybody was scared everybody was scared the whole pregnancy uh but I remember one of my biggest fears was waiting to hear his cry I like I was so nervous I was so nervous that I was gonna get so angry you know I was just I was worried that something was gonna happen in between the time that they started the C-section till I could hear his cry like I I was like I'm scared I was terrified of that of waiting to hear his cry I just I like I wanted to hear it so bad but I was scared that I wouldn't hear it or something. I don't know well you heard it I did hear it was loud it was loud well so going back to Evie for me I've had to learn to trust God with parts of her story that I can't control especially with the past couple of years with everything and in all of the previous podcast episodes I've tried to focus on one or two passages of scripture and for today I chose a verse from Isaiah which is one of my favorite books of the Bible but it's Isaiah 464 and it says I'll be your God throughout your lifetime until your hair is white with age I made you and I will carry you along and save you and that passage just makes me think about like their future Evie and Jack both of them they're their future God's with them the whole way he was with them he you know formed them in the womb and he has been with them up until this point and he'll be with them throughout their life so what is trusting God with their futures look like for you I know that she'll have him and her brother will have her and knowing that God is with them when we're no longer here is brings about a sense of peace and calm. Yeah and I feel like it's very good for you know people people with kids with autism to you know look upon the future but try not to fear it you know yeah I think rooting yourself in your faith is been something that both of us have tried to to do and and get closer in our walk with Jesus and and lean on him more I feel like it it's helped us also lean on each other in our marriage would would you say that?

SPEAKER_02 26:38

Yeah I'd I'd agree and I feel like doing you know the nightly you know devotionals is really really good I mean for the soul. Oh yeah for yeah both of us yeah I feel like that's brought us closer on our walk and it also at night with that calm and just being able to be at at peace and take in the word and process it and see all these things that God has done.

SPEAKER_01 27:18

Yeah. I also think it's like a good way to decompress after the day because you get hit with like so much you know like throughout the day and like sometimes we're tired and we don't feel like doing it or we're exhausted because we haven't slept in two days or whatever but I think it's such a good habit to have because it I know I know whenever I miss a night or like if I have a night that's my off night like a break I I miss it. Like I miss the next day I I can tell the difference the next day what about you? Yeah like it sometimes you know you had that one night in it out of the week that's like a a skip night or a catch up on you know catch up on your reading but sometimes you're just like I don't want to break yeah yeah well before we wrap up I just want to say something uh one thing that I've always loved about you as a dad is how playful you are with the kids you're always letting them climb all over you or you're giving them horse rides around the living room or you're chasing them around the kit the kitchen or building blocks with them or whatever. And honestly watching you love them like that has made me fall even more in love with you. And I just what's something that you love the most about being their dad just when I get home from work or even when I walk out of the room sometimes like just seeing their faces light up with that big smile when they see me and like and when Evie runs up to me and gives me a big hug and says daddy daddy that that just makes my entire day no matter how bad it was yeah it's definitely like makes my heart want want to explode whenever they run up to either one of us and like jump into us like we're the best thing on earth.

SPEAKER_02 29:36

It just I say that about Evie but because Jack if his mama's in the room will sit over there and smile at me and bounce up and down but he will not come run into my arms.

SPEAKER_01 29:51

He will eventually someday but I mean like even now like he will get down and come to you eventually but he's definitely a mama's boy for sure.

SPEAKER_02 30:01

I think you had snacks.

SPEAKER_01 30:03

I do not snacks I do not add snacks I I have all the snacks he knows I'm the snack queen but they're not hidden well if there's a dad that's listening right now who's scared about his child's future but doesn't really talk about it or or have anybody to talk about it, what would you want him to know?

SPEAKER_02 30:30

What I found that was really good for me was I found a group at my church that was um consisting of all men that had children with autism from you know from four years old up to you know forty years old. And they'd seen everything you know some of 'em going through everything that I was going through and you could have a open conversation without the fear of being judged or you know just support. And that I feel like for any father with a child with autism or special needs, that's a great outlet and a great resource to be able to have those people to be in your corner that you can call any time whenever you know you're hitting a wall because you know sometimes a man just needs to talk to another man that understands because not everybody you know that doesn't have kids with special needs understands how it is to have those yeah it's nice to have somebody who who gets it.

SPEAKER_01 31:53

I mean I do appreciate anybody you know asking or stepping in to try to help or you know we both I feel like we both appreciate that but it is like you said it is nice to have that support and be able to talk to somebody who who gets it what do you think? Yeah so like you know you're probably my greatest person to talk to about oh yeah I mean we definitely yeah we are each other's therapy yeah we're each other's therapist every day working through it little by little but I mean I do I'm glad that you do have a support group the other people because like like you said it is nice so sometimes I just want to talk to another woman about stuff and you know just like you said you just want to talk to another man about stuff you know it's just nice to have a different perspective. I mean I I appreciate your perspective obviously but it is nice to have a different perspective sometimes too so well uh thanks babe thanks for doing this uh I try to close out every week with a prayer and some encouragement so I'm just gonna go ahead and close out with our prayer for today so Father God we come to you today as parents who love our children deeply and sometimes carry fears we don't always say out loud. You see the weight that fathers carry the responsibility to protect to provide and to prepare for the future and you also see the quiet worries that live in their hearts Lord when the future feels uncertain remind us that our children ultimately belong to you you love them even more than we do and you're already present in every part of their story. Give the dads that are listening today wisdom as they lead their families courage when fear creeps in and peace when the unknown feels overwhelming. Help all of us as parents to trust you with the things we can't control. Teach us to walk one day at a time knowing that you go before us and you walk beside us thank you for the gift of our children exactly as they are thank you for the ways that they shape our hearts and draw us closer to you and when we start to worry about tomorrow remind us that you're already there we place our children our families and our futures into your hands in Jesus holy and precious name we pray. Amen well thanks again babe for doing this today I know that wasn't easy and I'm really grateful that you were willing to sit down and have this conversation with me. I think it's going to be really helpful to other dads out there too and the dads that are out there listening today we we see you even if you don't always say it out loud the way that you love and show up for your families matters more than you know. And every parent that's walking this road with a child who has special needs I hope that today's conversation reminded you that you are not carrying these fears alone. If this conversation resonated with you especially the the dads that are out there listening I'd love to hear your story. You can share it in our Holy Ground parenting Facebook group or you can send a message on that or on any of the apps that you're listening on. I read every message and every review and uh again uh please be sure to leave us a review on whatever app you're listening on. It'll help reach others there may be somebody out there right now that wishes that they had a community that really gets it and I'm praying that they find this podcast and I'm praying that all of us have a great week this week and we'll see you next time do you want to say anything?

SPEAKER_02 36:34

Uh thanks for the opportunity to share and be be a part of your podcast.

SPEAKER_01 36:39

Well thanks babe all right guys we'll see you next time bye and bye bye goodbye goodbye