This is the Truth Network. Welcome to Hope in the Morning. turning tragedies and tears into testimonies of hope. Welcome to Hope in the Morning. I'm your host, Emily Curtis, and joining me today.
Robbie Dilmore. Good to be back. Life 100 years ago seems so beautifully simple and calm in light of the hurried lives that we often lead today. Our guest to day grew up Amish and embraces an old world lifestyle. Her mothering journey, however, has not been simple.
She is the mother of a beautiful special needs daughter, and to day she shares her story with us. Mattie, welcome to Hope in the Morning. Thank you for having me.
So good to be on. It's so good to finally see you.
So I will start out by saying that we have tried to make this episode happen previously. But again, as the mom of special needs, sometimes things come up and your daughter's health takes priority. Overall.
So, can you start by walking us through when you first got that diagnosis for your daughter? Yeah, so I guess I'll just start with, um, the pregnancy itself. Um, The pregnancy was absolutely like. It was typical. It was perfect.
I had I just I had a great pregnancy and I I loved it. You know, I it was just the joy of my life, you know, and we were so excited. had prayed, you know, we were just I don't know. It just felt like life just couldn't get anyone perfect. And I remember towards the end of the pregnancy, I was like, I told my husband, I was like, This is just too good.
Like, life can't just be this good. Like how how are we so blessed to have everything just just you know fall into our laps like this And I was, I don't know, it just it felt too good to be true, you know, to have such a good story. And then. You know, we were pregnant with a little girl, which is what we had prayed for. We wanted a little girl so bad.
And so it was, you know, towards the end of the pregnancy, like our dreams were just about to just be completed, you know? And then Um, it was about, let's see, I was 38 weeks, I was almost 39 weeks, and everything up to this point was going great. And then, you know, healthy pregnancy, healthy baby, everything. And then thirty-eight weeks, five days, I started bleeding. And At first, I thought it was bloody show just because it, you know, I had been having mild, very mild contractions.
And I was just thinking, oh, we're going into labor, you know, this is great.
Well, as the day went on, the bleeding just got worse and worse. And finally, we're like, okay, we got to go in. I had a midwife, and so she. told me to go in. to get checked because she couldn't come out and check me at the time.
And so. We were just like, okay, we're going to hospital, we're going to go get checked. And we were still just like, oh, everything's fine, we're gonna be fine, they're gonna send us back home.
So, you know, we were all being positive and everything. and we get to the hospital and immediately knew Something was wrong. Her her heartbeat just was racing. Like it was through the roof and There was no everybody I mean we called my mom we called Um my husband's mom and we like the midwife, everybody was saying the doctors themselves, they were like, you have to do a C-section. to save her life.
And Um, my husband, the doctor, I guess, told him that that's He was like, You better do a C-section to save the baby's life and maybe your wife's life too. Wow. Cause I what we found out is I had placenta abruption and I don't know how long it was going on, but Because of that, she had a very severe brain bleed. And We didn't know this until day five, so Of course, the emergency C-section, it was... incredibly traumatic.
Um I won't go into that part because I will cry. Um but yeah, so I didn't get to hold her. She was. She's she came out crying, but then she she, um, choked on meconium and blood. And then she was immediately taken out of the room.
They were trying to get her to I can't remember I don't know if she was breathing or not. At that point everything was just kind of a blur. Um, they did get her stable, they took her to the NICU, and then it was probably an hour and a half later where I finally got to go meet her. Um Of course at this point we are just We're just like knocked off her feet like we don't know it it We're just going through the motions and we we're just doing what we have to do. Um So yeah, I It was incredibly rough that first night.
I didn't, I held her for maybe. 30 minutes. No, no, no. No, I didn't hold her that night. I did not get to hold her until the next day.
So yeah, just the everything that a mother is supposed to experience. Post-birth, none of it, not even the birth itself.
So all of that. Um just trying to get through that and then The next about five four days the next four days in the NICU were just So intense, and so we truly did not know. if she was gonna make it. Um And it was, it was the weirdest thing because, you know, we go from having this perfect pregnancy to all of a sudden. our world is completely turned upside down.
Um And then it was on day five when We kind of it was the morning of day five. It was kind of a dreary day. And I I just remember telling my husband when we got to the hospital that morning 'cause they had at that at this point we had been I had been discharged from the hospital. And I just remember telling him, I was like. That's just today just feels so heavy.
And I had a gut feeling because they were doing the MRI that day and we were terrified. Um And so But yeah, I know and he was He was still just like, oh, it's going to be fine. She's fine. Nothing's wrong. And.
Mm. My gut was like, I know better than that. I was trying to be positive, but I just, my gut, and I knew. And so yeah, that morning I was like, I just It today just feels really heavy. Um And it turns out it was.
One of the hardest days of our lives. They gave us, um They did the MRI and We're sitting there, they they come back into the NICU. After all the results and They closed the doors. Completely, they pulled the curtains, and I was like, oh boy, this is bad. Um Oh, it's so hard.
Um Yeah, so They we sat there, um Just listening to them like we're in complete shock and they're telling us her condition. And I, yeah. I I mean, at that time, like, what do you do? We were I it was just the most. In complete shock, obviously, but just like your entire life just came crashing down, is what it felt like.
So that was the initial Kind of how it was, you know, getting the diagnosis.
Well, they didn't give us a diagnosis because you can't do that at birth. But they gave us a very very good outline of what the future would look like. What did they think her prognosis long term was going to be with the severity of her bla of her brain bleed?
So, um, they told us that the severity it was of vi it was pretty severe, like one of It was definitely not a mild case. It was not. the severest case you could get, but it was right up there. And so they told us, um She may never walk, she may never never walk, never sit, um And there were other things as well, like just also if feeding on her or eating on her own. Um her vision, like things like that.
And at the time... That just looked. I don't I don't even have words for what that feels like to be told all those things about your child who was just in the womb perfectly fine. Yeah. It is A brain bleed, is that a pretty common Side effect for placental abruption?
Yeah, I feel like it is. Um. It it just depends how long it was going as well.
So apparently. It was, I must have been bleeding internally before I, before it was outward, just because that's how severe it was.
So if you catch it in time, sometimes. Um the babies are fine. But This this can obviously cause uh the child to die. It can cause the mother to die too. For those that are listening, it it is one of the leading causes for maternal mortality as well.
Right. Yeah. Mm. So how long was Avonlea How long was she in the NICU before you brought her home?
So she was there for sixteen days. which is shocking because they were telling us six to eight weeks at the least. Um And we started praying. That's we literally, we reached out to her friends and we just. People were praying.
Um and that's the only reason that I think we got home when we did. Hmm. Wow. How did you and your husband not only lean on each other for support during this, but you just mentioned prayer. How else did you lean on the Lord or your church?
Um I mean, obviously prayer, but there was there was a set there was a lot of like It just, we knew that God had a plan. Um And there's there's this piece that You it I feel like people that are in these hard situations where It's a terrible tragedy to go through. You're given a peace. Like if you have Jesus, he gives you a peace that literally doesn't make sense. Um and so for us We were leaning on that piece.
We were leaning on knowing that God was going to work this out for good. He was going to make this a beautiful story. He was gonna make this, um Maybe maybe even reach other people, m reach others who You know that it in the beginning that was a lot of what we I don't know. We just focused a lot on that, just knowing that God was going to bring so much good from it, as heartbroken as we were. Yeah.
Hmm. How old is Avonlea now? She is two and a half. Two and a half. Yeah.
Well, when we come back in a few minutes, we're going to talk more about how. How Not only how the church can interact with those families that are going through. Um Just unexpected suffering. You know, I mean, this was not something that you expected by any means. And right, right.
But also, just what life looks like and how we can pour into families that I mean this is this is a lifelong This is a lifelong journey that you're going to be facing with Avonlea. For sure. Yeah. But join us in just a moment on Hope in the Morning. Hope in the Morning allows you to lean into the suffering of others and helps equip you to purposefully mourn with and meaningfully minister to those suffering in your midst.
May these testimonies cause you to see our God with fresh and thankful eyes. And may you seek to be His hands and feet to every weary heart. Visit hopeinthemorning.org to learn how you can partner with us in ministry. John thirteen thirty five says. By this, everyone will know that you are my disciples if you love one another.
Do you know how to best love and serve your hurting brother or sister in Christ? Listen to Hope in the Morning and be equipped to offer the hope of Jesus to every hurting heart. To learn more or to partner with our ministry, visit us at hopeinthemorning.org. Have you ever struggled to comfort a grieving friend? John 11:35 says, Jesus wept.
When Jesus was told by Mary and Martha that their brother Lazarus had died, Jesus wept. Today, on Hope in the Morning, we invite you to learn what it looks like to weep with those who weep. Learn what it means to sit in the ashes and be encouraged that even in our morning, there's hope. His name is Jesus. Visit hope in the morning.org to learn more.
So welcome back to Hope in the Morning, and we're so blessed today to be hearing um Addie's story on her daughter as she was born Uh with a It's essentially a horrific brain bleed that led to all sorts of disabilities and You know, at this point in the time, it sounds like we're two and a half years in. And so You know, for our listeners, I know I'm curious, you know, kind of where does that? Where did it stand early on? Like what What was it like to bring her home and what what was it like to have this child Um Being your first baby, right? And then, oh my goodness, it's hard enough with your first baby.
And then this baby is going to require some different care. What was that like? You're asking me right.
Sorry. Yes, it Going from, you know, being so excited for your first child to suddenly being thrown into. a completely unknown world. Um Mind you The trauma? Add-on grief.
Um A first-time parent should never have to go through that, you know. First time parenting is hard enough, you know? Right. And then throw that in the mix. I'm just, you know, I was like, how.
I truly I have no words for how to even get through this. And you literally just get through it one day at a time, sometimes one hour at a time. And You learn things that you never imagined. you'd have to learn, you know? But when you're forced to do something and you have no choice, you just simply do it.
Yeah. I it's it's hard to explain like when you when you're forced to do something, you just you have no choice and you've there's a strength there that you didn't know existed. Yeah. How how has Avonly's life enriched yours, and how has her life drawn you closer to the Lord? Oh, good question.
So I really just I see I see her as an angel on earth. And to me It's like I get to care for an angel. I get to care for a heavenly being. And She is she brings so much light. and life, like, yes, her body physically.
um is not capable of much. But that just does not define her. Like, she has so much more. Um, like she just brings so much more to the table and she has such Beautiful life lessons. To teach me and to teach everyone around her, you know, just with her spirit, like she she's.
She's just pure angel. Mm. What are some of the life lessons that she has taught you? Oh my. We can do hard things.
and hard things Do not mean. Bad. Mm-hmm. Um Also that life does not have to be the way we imagined it To be to be to still be beautiful. In fact, you can find beauty in the darkest places.
And Yeah, I feel like That's a lot of what it has taught me is Well and also You can live with grief. Which the whole grief side of it is a whole other thing, but it ties into it a lot just because it is such a tremendous grief. You're grieving what you thought your future was going to be. You're greeting what you thought Avonly's future was going to be. Totally.
And in a way, like... You almost, it's so, it's weird because you feel like you lost. Your child. But the child is still with you? It's I I really don't know how to explain that 'cause it's you know, people people that haven't been here in this place are like, What are you talking about?
You've got your child, like You know, um, but it it doesn't make sense to anyone unless they're in it. Yeah, yeah. And so I I know for a lot of folks. Because I've worked with special needs for years and years, it's really, really, really hard on some marriages and other marriages that really. Um is like fertilizer.
It makes them really grow closer together. and and and lock arms. And so I'm interested in how your husband He's dealt with it and what's going on there. Yeah, so I feel like he he accepted it. Before I did.
So more for the first I would say a year and a half He He was trying to be there for me. trying to hold me up because I was the one experiencing I we were both experiencing the grief. but it was different for him. People grieve differently. People, well, and on top of it, it was so traumatic for me.
So I'm dealing with the trauma and the grief combined, which makes makes you feel and look like a crazy person. in private sometimes.
So You know, he's h he's trying to hold me up through it all. And Oh. Both of us are trying to get through this. And there was a point where It felt like It it just it was so hard. that it was almost like We finally realized it was like, oh, we are not fighting each other.
We are fighting what happened to us. And so it's not it's not me and him against each other. It's It's us against. the world you know um and we're a team you know we're not We're a team fighting one thing. Um Once we realized that, like, it, there was a point where it almost broke us.
Um and then that was the that that was the point where it was like, oh. We are in this together like we're a team. And so once we could see it that way, it was it was just night and day different. In how we were able to get through it. That's beautiful.
Did you guys come to that conclusion yourselves? Or was that something that you kind of sought counsel on when you're saying that things started? going a bad direction. in your marriage for a season there when things got really hard. Did you come to that conclusion yourselves that we're a team, or did people step in and help you?
Yeah, we did. Um I would say my husband did, first of all. I, you know, at the he was always the one able to see it a little differently than me, and he helped me to see things differently. Whereas when you're in the middle of the pain, it is so hard to see past it. And so.
Another thing that he did a lot, he prayed over me. He prayed over me so many times because in the depths of all of it.
Sometimes you can't you just you feel paralyzed, you're you You know, it's so heavy. And I would just ask him sometimes, I'm like, just please pray. Pray over me because I can't. I can't cope right now, you know?
So that was a huge thing too. And honestly, like I The man deserves a lot of credit because he he held everything up when I broke it all. You both do. I can assure you, you both do. But also, you know, Abbingly, I'm you know, I'm I'm very anxious to to know, you know, what's it like if I were to come see her, what would what would I experience?
You would she would probably initially act a little shy. Um She might cry until she realizes you're a friend, and then you talk to her. And she will smile the biggest smile. She will laugh. She will, in her own way, start yelling and babbling, you know, like she she has her way of just.
Cheering everybody up. She's such a happy kid. And so. If the minute you start talking to her, oh, she'll just get the biggest smile on her face. She'll start kicking and she'll start, like, you know, moving her hands.
Um,. Yeah. That's pretty cool. Oh, yeah. I I have worked with of folk children like that, even even young adults like that.
Um It's a little uncomfortable when you're not used to it. The more you become used to it and the more you realize what's really going on, Um there's a joy that can only be expressed that way that in the way that they can. And they're really champions. Absolutely. It's a beautiful thing.
Going off of what you were just saying, Robbie, I was curious, especially as a mom of four kids, how would you instruct parents to train our kids to interact with other children that do have special needs?
So I would For one, um Teach them that Having a disability is not a bad thing, and it's not something that. Makes another person less than Um and also just including trying to include The special needs kid. Um or or have them it's different for everyone, every kid, because you know, there's so many different types of disabilities and some kids don't want another kid to talk to them. Um others Like Avonly, I mean, she loves. When kids come up to her and just start talking to her, she loves that.
And so I You know, I like to think it makes her feel included. And so I would the biggest thing is like Talk like teach them to, you know, talk to these kids, even if they don't know what you're saying or. under you know, can't understand like just you know, find a way or ask questions like Have have them, it's okay, you know, their kids are curious, you know.
So, you know, just explain what's going on and. you know, make it it like it's not a bad thing. to 'cause growing up that was something that A lot of I actually have five deaf siblings, so I had experience with some somewhat special needs. And the thing that was, I think, another reason why part of it was so hard on me. is the first thing I could think of was oh, This my daughter is gonna get mocked.
She is gonna get Mm-hmm. nobody's going to love her. Because that's what happened to my deaf siblings. They were mocked because of their disability, which is absolutely horrible. But that did happen and That that should never happen.
So that's another thing just Never never allow any kid to mock another kid for a disability. I mean, not for anything ever, but especially, you know, a disability that they can't help. Yeah. And I would I would add to that. They may not be vocal.
They know way more of what's going on sometimes than people that are vocal. They do. They do. And it will sneak up on you that you didn't think they knew. Oh, they know exactly.
And they're reading signs that we don't read because they have a different way of perceiving the world. And part of that is the gift. Yeah, yeah, yeah. It is that's interesting because even how you were talking about with your siblings, which you said you had five siblings that were deaf? How many siblings do you have in total?
Eleven. Eleven. So you're one of twelve. You're one of twelve. I'm one of I'm the oldest of twelve.
Wow. Wow. Yeah. Do you feel like the Lord uniquely prepared you a little bit to to be maybe a more compassionate Mother for a special needs child through your siblings? Absolutely.
Yeah. although I would have never in a million years dreamt that. I would have a special needs child other than I knew that death was a possibility. But that didn't bother me because I knew I have deaf siblings, and they're so cool. And so that really didn't bother me.
Yeah. Having because that's the only handicap they have. Otherwise, they're completely mobile and everything.
So Having an immobile child versus that is n it's a whole different ballgame. Yeah. But yeah, nothing nothing could have prepared me for this. I mean other than you know the little bit Looking back, I think... There was a lot of moments in my life where I'm like, oh God what God was preparing me for.
For this, yeah, yeah.
Well, those of you that are listening on the radio program, we're going to continue this conversation on our podcast and on our YouTube channel.
So you can listen to us wherever podcasts are listened to, or you can find us on YouTube at Hope in the Morning Backstage. But we're going to talk a little bit more about what are unhelpful or hurtful things to say or do, and what is helpful? What can we do to come alongside? And And also, I think that it's important to unwrap a little bit of what it looks like to walk compassionately alongside those that have experienced trauma. Because you've mentioned that a couple of times, Maddie, that there was trauma involved in this, not just grief.
And we talk often on Hope in the Morning about grief. We don't talk quite as much about trauma. And I think that that's an important thing for us to discuss as well and be informed on.
So I would just say before we leave, Maddie, you have a pretty neat. um Instagram channel where it's called Shades of Old. And you kind of do everything old world. It's very beautiful. Can you tell us just briefly about your channel and where they can find you?
Yeah, so I'm currently I'm just on Instagram because I can't handle 10 different social media apps But I'm on Instagram shades of old and Yeah, it's just shades of old I think don't think there's any other letters or anything And yeah, I just I share. kind of old world charm. Um, I add my own spend everything. I share my story as well from, you know, childhood to Haven't gotten to now as much yet, but yeah. Just w walking through that and I try to make my life vintage as much as I can.
It's really, it's really beautiful, and not just beautiful, but it's a very peaceful piece. Page to be honest.
So, going back to what you had said as far as the trauma goes. Were there people that helped you through that trauma? Is that something that you're still working through in aspects. Yes, um, I didn't have a lot of people. Um to have walked me through the trauma.
And I it is definitely still something that I am Working through. Um And I feel like It's something that I have to be so careful who I talk to about it, and there's very few people that I have been able to trust, you know, to to open up about it, you know, because it is trauma can be especially when it's combined with grief can be so intense. that Few people want to go there, you know. And so I feel like my husband's gotten the brunt of a lot of it. Just because he lives with me, obviously, and So he's He's the number one person, obviously, that has helped me through all of it.
Um Yeah, otherwise not I mean, I have some close friends, but otherwise not really Other than therapy, is therapy something that I'm wanting to go through and Just, yeah. Get more of it out. For us to keep in mind, is when you're saying that because it's so heavy and there's so many nuances to what you've been through between the trauma and the grief, that not many people are willing to enter into that with you. And you know, that's one of the things here on Hope in the Morning that we want to grow in. You know, that we want to learn what does it look like to be Christ-like, genuinely Christ-like as a believer.
And, you know, as we talked about a little bit in the introduction, one of the things that is so beautiful about your page is that it's this. Slower, less hurried pace of life. And oftentimes, We we fail to enter into people's suffering. Because we're just simply too busy. And that is that is not.
it it it's a hindrance to us being Christ-like. Because instead of being willing to say, I'm willing to take your burden on myself. Just like Christ does, right? Christ tells us to take his yoke because it's easy and light, and that he will carry our burdens. That's how we want to be.
In the church. And what are some practical ways for mamas like yourself that have been through trauma, have been through grief, are currently raising a child that does present a lot of daily challenges to you? How can we come alongside you in practical ways. and be Christ-like in our love.
So a lot of so just, you know, everyday things, um. Check-in. check in on, you know, Check in on the special needs moms and Ask them what or maybe maybe not ask them even what can be done like Just offer, say offer to do the laundry or Say, hey, I'm dropping off a meal, or things like that. the things that are not helpful is what can I do for you? and I'm just like, um Well, everything, first of all.
Yeah. Um, that it and it that kind of puts the burden back on you where you you're already so overwhelmed with everything that trying to think of what you know what needs to be done, but you also You're like scared to tell them what needs to be done. And you don't even know what to tell them because where do you begin?
So a lot of it I feel like is offering something specific and say, hey, I will do this for you. And then Also, checking in on them on a regular basis. Um I had people check in with me for I mean, off and on. the first the first couple months And then it just quit, you know. And I know that happens with a lot of any type of grief.
Like people keep going on about their lives and the those that are still in it they're left to fend for themselves and That's oftentimes the hardest time is when everyone goes home and People stop checking in on you and... Yeah, so I think that and also I guess the thing another there's People don't see having a special needs child as grief sometimes. Not everyone, and it's different for everyone as well as far as how they experience having a special needs child. But for some the grief is just It's completely r like feels like it wrecks your life, you know? Um And so people don't and that's another thing is people assume that because you still have your child that, oh, you're not experiencing grief, which is just not true.
So, yeah. Yeah. I think it would be helpful to kind of go over that. When you experience what you went through, Right? With all that went in the hospital, it was traumatic from the standpoint of, oh my gosh.
I could be dying. Oh my gosh, my child could be dying. And then all of a sudden it went from, oh my gosh, how am I gonna and so it ends up making you hypervigilant. In other words, you and and and mothers are hypervigilant anyway.
Well, just take that, multiply it by about seven. And and what that tends to do is stick you in a particular time that you can't really get out of. And and and and and that happens with any grief almost. Like it doesn't take anything to trigger you to go back to the point of loss. Oh yeah.
And enzymes, and all sorts of other things that just mess with your world. And since you're being hyper-vigilant anyway, well, just now. It's one thing to be um um a You know, maybe if you can remember, if you're a mother of a two-month-old or a three-month-old, you've got to watch every single thing that's going on.
Well, now just take that and say, okay, you've got to do that for the next five years, where it's always like that, and you always got to be hyper-vigilant, and you've got all this, okay? And so I'm just trying to paint the picture to say, oh my gosh, this is a struggle. But here's the beautiful thing. Dan Elder is is is a amazing Um Trauma counselor and grief counselor. If he's out of Washington State, if you ever heard of him, he's absolutely amazing on this.
But what he teaches is so beautiful. is in Isaiah 61, you know, Jesus promises right there. Um You know, that the Spirit of the Lord is on me to bind up the brokenhearted and to set, because what's happening is you've become a captive. Not only to The hypervigilance that you're experiencing, but also to the moments of the trauma that you're still in. But the only Real help.
To some extent, is Jesus because Jesus. He lives in all time. He just doesn't live... You know, in today or yesterday, he was there when all that was going on with you, and he was with you with all that going on with you, and he's there now. And so, whoever is working with you, whether it's your pastor or Dan or some other grief counselor, if they don't involve Jesus in this, because the only person that can really touch your heart.
which is where all this stuff is getting stored up. Is Jesus, right? Absolutely. And he can bind up your broken heart, but you become such a captive. that that he can show you Okay.
And and you know, this is just being brutal that You still blame yourself. for certain things that happen. You still blame your husband for certain things that happen. In other words, there's all this forgiveness that's going all over the place, right? And somebody you know, and hopefully between you, Jesus, and whoever can say, okay, where do I need to push into forgiveness?
Where do I need to push Into You know, some agreements that I might have made, like, oh, well, this is going to ruin my life.
Well, Satan just grabbed a hold of that one, and he's going to beat you over the head with it for the next, you know, period of time until you break that agreement.
So you have agreements that have to be broken, you have trauma that has to be experienced with Jesus, and getting into that. And the good news is. That When you get healing, Or you see other people Then everybody can see your story and they can get healing from watching you heal. Just like you can get healing from hearing other people with similar situations get healing and know, oh, there's hope. There's a rope I can hang on to because I know Jesus is coming.
To the rescue. And he will bind up the brokenhearted, and he will set the captives free. But like you say, it it it is it's brutal. And it's Um It it's intense. But you were made for that.
I mean, you really are. And you're a warrior. I mean, and your husband, my hat's off. Like, man, I'm listening. I'm like, golly.
For such a time as this, you know, he's in there praying and doing that. I'm blown away. And I hope, you know, a lot of husbands are out there seeing this example. It's just absolutely beautiful. What's his name?
His name's Brandon. Brandon. That's beautiful. Yeah. I think what you were just saying, too, Robbie, is important for the listeners to remember connecting with what Maddie had said as far as not just saying, let me know if there's anything I can do.
What you just said is what, that's what Maddie and other moms are experiencing all the time. It's overwhelm. all the time in your heart, in your mind, in your schedule. It's overwhelm. And so when people come to you and say, let me know what I can do, it's just adding to the overwhelm.
And honestly, that's pretty true of a lot of grief and trauma, it does actually change. It changes the mind. It changes the brain. And just like, you know, we've heard of pregnancy brain, and that's an actual thing that you get like this pregnancy fog.
Well, so is grief brain. Like that is an actual thing too. And it changes the way that we think about things, changes the way we process things. And even like you had mentioned, how moms. We we tend to be natural warriors.
But Maddie, I can't imagine how much more you have to fight that and have to fight things like anxiety and worry over Avonlea's life. Because even one of the posts that I saw you make When Avonly was just a little newborn, and you said something like, she doesn't know it yet, but she will have to watch her baby have hundreds of seizures a day. And that, man, that's that's what a hard thing. to read even on this end of the screen as a mama. And You know, to think as moms, I can think back when my kids were really little, and it's like almost like if your kids are sleeping too long, you're going to go check in that grip and make sure they're breathing, you know?
Yeah. and how amplified that would be. Um And that's so important for our listeners to hear because, like you were mentioning, Robbie, this is not a short-term thing. And things like chronic illness or having a child with special needs. It's a lifelong thing.
And just like you were mentioning. Maddie, that it has to be taken a day at a time. Because otherwise You just, it's completely overwhelming if you look past a day at a time. And how do you when when you have those anxieties stir, How do you bring that before the Lord? How do you submit that to Him?
Um so A lot a lot of times I'm just...
Well, I remind myself of a couple things. Um There's about there's two verses that have been really special to me. Um One of them, I actually haven't. Let's see. I haven't written down here because I knew I was going to forget him.
Because I did want to mention them.
So. James 1, 2-3, it's consider it pure joy when you face trials. um of many kinds because you know that the testing of your faith you know, produces steadfastness. And So when I would go through, you know, when I would have The You know, just moments of like, I can't. continue or the anxiety hits, like I have to remind myself I'm going through this.
To become stronger. He's gonna make me stronger. Every single time, like, I think I can't do it anymore. I think I'm. you know, sometimes you feel like you're gonna die because it's so hard and You just Well, Juan, a lot of times I just cry out and I'm just like, Lord, just please help me.
Because right now I have nothing left to give. and I have no more the anxiety is already I don't even have more anxiety to give. Although you know, how how's that possible, you know? Yeah. I've learned to almost become numb at times because it's too much too much.
Um, but then also, yeah, just, you know, reminding me of the promises that Um This this is he's He's giving these to make me stronger. And then there's another verse where it talks about the trials that we are given um are sometimes the reason they're given to us is to so that we can comfort others. in their time of grief. That honestly helped me so, so much. And that's in 2 Corinthians, I believe.
Chapter 1. And it was crazy because actually, one of the ladies at my church had brought that one to me, and I didn't even know that verse existed.
So. you know, just remembering like First of all. one breath at a time when the anxiety hits. Um and he's gonna he's gonna get you through the next minute and then the next and the next and then remembering the promises that he's all gonna work it out for good and he's gonna write a beautiful story from it. I love that.
And actually, I was saying to Robbie while you were saying that, is that that verse in 2 Corinthians has become like our show theme verse. I feel like it gets talked about so much. And I love that because it's true. And one of the things that we can remember too, sometimes we don't step into those hard seasons with people because we tell ourselves, well, I don't have any experience with that.
So maybe you've lost a child or you've gone through chronic illness or you've lost a spouse, but you're thinking, well, I've never had a special needs child. I don't know what to say to her. I don't know what to do.
So I'm just, I'm not going to go there. But the reality is, is that the Lord comforts us all uniquely in our suffering, but you definitely learn something no matter what kind of suffering you've been through. You learn more a heart of empathy and compassion. And again, another reason why Hope in the Morning is here is because we want to help grow. That heart of empathy amongst believers so that we can walk.
Out of just this generous abundance of love for one another, that we can say, I'm going to sit with you. I don't know exactly what you're going through, I don't, but I'm willing to sit here. I'm willing to come hold Avonly. I'm willing to come have coffee with you, I'm willing to bring food by, or just let you vent about your hard day or what you're struggling with this week. That's love in action.
You know, and prayer is powerful, of course, it is, but we also have to put our love as Christians into action. And so letting us know some of these helpful ways, I think, is a great tool. for us to to grow in in Christ's likeness in the church. Yeah. So Is your church or Are you able to drop her off as your special needs ministry?
Or is this is she still just require your care all the time?
So we So they have a nursery at church, and we tried putting her in nursery. She she actually absolutely hates church. But I believe it's it It's too loud for her and it's overstimulating.
So we do have nursing, but we can't always get them on Sundays. And so there is a time period where we've just kind of, we go when we can. Um when we have a nurse and we've also taken a step back from just You know, sometimes we spend time in nature. Instead of going to church, because for us, like it's so healing. to be in nature and that's another thing um So you can you take lovingly out in the nature too?
Can you take her with you? Oh, awesome. Yeah, she loves being outside. Um. And that's another thing.
Like we're right now in a season where Going to church is really, really hard. Because of all of the circumstances and so we're kind of trying to like go through all of that as well. Um And I know. There's there's sometimes there's like a little stigma with you know not going to church. And it's and that's another thing, like sometimes Um When you're not able to go.
It's hard for people to understand why. And it's hard for people to understand that it's actually such a big deal that we can't just. force your child to go Um Or You know, if that makes sense. Yeah. Oh, believe me, it makes more sense than you could imagine for me because...
In so many special, especially in autistic special needs children, overstimulation puts them over the root. And then You know they're not getting anything out of the church experience. The family is so worried about them that they're not getting anything out of the church experience. And so, you know, how do we incorporate that You know, it's something that churches everywhere, from my standpoint, ought to look at these families and say, okay. You know, how do how do we make sure that we keep these folks in in the church and in community, but at the same time, minister to their needs based on the situation that they're in.
And I love that you're making those choices independently. And challenging, I would challenge the pastor of the church, hey, let's. Mm-hmm. brainstorm this on ways that we can Um help other Families that are experiencing something similar because I assure you that you are far from the only parent in your community that's experienced in that. I know it.
Yeah, and this is very different. This is very different than what Hebrews talks about, as far as like, do not forsake the assembly, as is the practice of some of those, because that's not what you and Brandon are doing. You're not forsaking the assembly, you're not prioritizing something different. You are saying, This is something that matters to us. This is something that we desire, but you also have the stewardship of Avonlea, and you have to do what is best for her as well.
And I mean, that's your number one ministry as a mother and as a father is your family. And I I love what you said, Robbie. I love the idea of like, get the church to kind of, just like we do with shut-ins, you know, get the church to come and see what we can do to. make more opportunities for families, whether it is someone coming can can can untrained people help with Avonly, or does it have to be a nurse because of her? Her special Some people have the touch, others don't.
Okay. Um, and she's really especially. anywhere that's overstimulating for her, there is nobody that can take care of her. Um Even as a parent, I have to take her away from the noise or, you know, and like you were saying earlier, it's not a pleasant experience for anybody. like when for the parents or the child, um And it's so a lot of times for us, like.
Um We're taking turns. taking care of her. in somewhere in a quiet room or outside she pro you know sometimes literally have to take her outside Which is you can't do that in the wintertime either. as much and so Um Yeah, it's just it's it's um It's a really hard experience to be able to figure out Figure something out that works, you know, and also just having people. It's hard for other people to care for her when they haven't the training.
And. Yeah. Yeah, I think it's a it's an interesting opportunity for the The technology that we have, obviously, we have you here right now, and your daughter is somewhere, you know, so clearly. It's dead. There's lots of avenues that could be explored that could help you in that.
But I love the idea that when possible. to go outside because there she experiences God, right? Because the heavens declare the glory of God. I mean, it's it's right there and she and she is able to worship. Like you said, she's an angel by all means.
And And and there she It feels at home. Right. And where she can experience that. And so it's neat that certain people have the touch and other people don't. Isn't that the case for all of us?
Yeah. True, yeah. There's some people, I'm okay if you don't come around. Yeah, yes, and there's other people like, please come, you know, like, you know, yeah, yeah. Yeah, and that's another thing is just like It's It's important for me to have connections with Humans and real, you know, in-person connections, and so that's what makes it hard, too, is like.
Even when I do take even when we do take her to church, I end up spending all my time caring for her between me and my husband that it feels like we don't even get to connect with anyone. And so Yeah, it's been a journey for sure. We're still trying to figure it out, figure out what works best for. for us and her and Um yeah. Do you guys have other children or is she your only child right now?
She's our only child.
Okay. Okay. Yeah. You know, for those that are listening, that maybe have loved ones or people in their church that they know that do have children with special needs, or even if they have. a spouse now that maybe got a TBI and they have special needs.
Are things like home visits? a helpful thing for them to come and just sit with you for a time? Um, are you saying as far as like therapists and doctors? No, no, like people people in the church. Would that be something that is an encouragement for people to just come sit with you from the church so you have that interaction?
For sure. Especially if you have a close relationship with them, like if you know. Um you know they truly care. Um absolutely like Just take taking the time to hear their hearts. And really just hearing them out and what it's you know what they're feeling and All of that.
Yeah. Well, I would I'm curious what what are your HOPES AND DREAMS FOR AVONLEAY. Oh my. I Honestly, just I hope and pray. that she touches so many lives.
And Makes everyone's life that she ever meets makes their life better. Um. You know, I just I just want to see people smile because of her. Yeah. And she's she's a beautiful little girl.
And again, those that are watching now, they can go to your page on Instagram, which is Shades of Old. And you have a beautiful little tea party video that you did for her birthday. And was she named after Anne of Avonlea? Is that what you named her after?
Okay. Yes.
So, again, everything that Maddie does just has this. this charm to it and this beauty and this simplicity and I think that you would be greatly encouraged to follow her page and see her beautiful little girl and to pray for her. Not only to pray for Avonly, but pray for Maddie and Brandon. If you're listening to this episode, I really encourage you to pray faithfully for them. Pray for those that are in your congregation.
That have daily challenges, that the Lord would renew their strength day by day, that He would renew their mind, and that He would fill them with joy and a bright hope for the future. Maddie, thank you so much for joining us today on Hope in the Morning. Thank you. It was great being here. It was nice to meet you.
Yes, it was. Yeah, you too. Hope in the Morning is a non-profit ministry that seeks to encourage the hurting. Equip those who walk beside them, and evangelize the lost with the hope of Jesus Christ. to partner with our ministry or to make a donation in your loved one's honor.
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