But if we could have a small group of people that we could go look, can you pick up the prescription?
Can you come sit at the park with my child so I can drive in my car and cry for an hour because I really don't want to do this anymore? Just a small group of people that hear our stories and look past the behavior. And I think that is really important. Well, that's the heart of a special needs mom and we have a panel of three special needs moms joining us today for Focus on the Family with Jim Daly. I'm John Fuller and we're glad you've joined us.
John, we had a great conversation last time with these three very special guests. You know, the thing that I walked away with was just how much of their lives in a smaller way reflected in every one of us. What God is trying to teach us in this thing called life and keeps coming back to selflessness. Some of us who have very tidy, all, you know, compartmentalized lives, we may not be learning the lessons that these wonderful women are learning and their husbands, given they have special needs children, which puts a lot of demand on them in their marriages and their family. And they have to become selfless. I walked away with that sense of, wow, what a blessing.
But it's not easy. And we're going to continue this discussion today with our guests who have written a great book, The Other Side of Special. And I think all of us can tip into this discussion and learn more about the characteristics of God and how to love our children to the very end. Yeah, there's a lot of encouragement to go through hard times with God and to see him in it all. And if you missed any of the previous conversation, get our mobile app.
It's a terrific way to access the entire library. Of course, other YouTube episodes, podcasts, a variety of ways to connect with our guests. And they are Amy Brown, Sarah Klein and Carrie Holt. They host a podcast together and they also have this book that Jim mentioned, The Other Side of Special, Navigating the Messy, Emotional, Joy-Filled Life of a Special Needs Mom. And we've got more details for you at our website.
Just stop by the show notes for all the details. Welcome back for day two. It's good to have you.
Thanks for having us. Yeah, we ended last time promising that we'd talk about that brutal truth where things aren't flowing well and maybe you shake your fist at the Lord. Really, how did you manage those moments of doubt and stress and anxiety? And Lord, seriously, why me? Kind of thoughts.
Let's kick it off with you, Sarah. I likened right after diagnosis to a fog. Once that fog started to lift, there was a lot of anger for me and a lot of doubt. I never doubted that there was a God. I never doubted the magnitude or the magnificence of Him. I doubted the loving side of Him. How could a loving God watch my son go through this? And it was really difficult to go through. And I realized I had a conversation with God in the closet. And it was because the closet was the safest place.
Nobody could hear me. And I was just like, how could you do this? I can't watch my son die. And it was just like He said, He was like, I know how it feels like, yeah, it's difficult. And that gets me every time. But I was so angry for so long. And it was almost like He said, I know your doubts.
Why are you trying to sugarcoat this? I still went to church. We still sang. We still taught Sunday school.
We were the quote unquote perfect little Christians on the face of it. But I was so angry. I would leave during worship songs.
I deprogrammed the Christian stations off my radio from my car. I was just like, I can't. I felt like such a hypocrite. And so I decided if I truly don't believe in the kind of God that I need to believe in, then I'm going to prove it wrong.
I'm a statistician by trade. And I kind of pulled out my nerd hat and I'm like, I'm diving in. And the more I dove in, the more He was giving me answers. And He wasn't angry that I was angry.
He was like, Okay, finally, you're bringing this to me. I've known you're angry all along. I've known you're doubting all along. So let's get into it. And so we did and it was everything. I've said it before that my doubt really fortified my faith.
And so now even though I will have doubts, it doesn't mean that I don't have them. I still will say, Okay, why God? Why is He doing this?
My son just stopped walking. And I'm like, Why? I've learned to still, it's not that I'm asking a wrong question. It's not that I'm asking, why is wrong? It's now I'm like, Okay, why?
Why? Why are you doing this? And what are we supposed to gain from this? What do you want us to put forward from this? It's just switched a little bit. It's not like why are you doing this to us?
It's okay, why are you letting us? Well, I really appreciate that. And, you know, kind of the imagery I'm getting is you're digging with a shovel and you're finding a gold nugget. But let me press on a little bit just to being able to make that transference from doubt to, I guess what I would describe as belief but with, you know, with regret. Is that a good way to express it? And is that a different stage of belief? You know, now it's not, maybe God isn't there because I'm not in a better place, but He's there.
And what does He want to do with this with me? Right, right. I can see I think with time, you can look back and see how He had His hand and everything. And when you are on your knees in a closet, angry and crying and doubting, you're not, it's almost like you're not lifting yourself up to open up to God. I was so busy trying to keep Him out and trying to be angry at Him, I wasn't letting anything else in.
Yeah, that's so good. And again, it's a process, right? Let me do this because it is day two, and I should have started here, but let's just kick it in right now. Give us that thumbnail sketch of what your special needs child is dealing with for people that are watching on YouTube or listening, and they didn't have time to listen to day one yet, which I would really encourage you to go back and do. But Sarah, just that thumbnail of your struggle there.
My son has Duchenne muscular dystrophy, and it's a progressive, aggressive muscle wasting disease that impacts every muscle in the body, including the heart and lungs. And it will be terminal. It is, yeah.
Yeah. And Carrie? My son has spina bifida and hydrocephalus, and he's a full-time wheelchair user. He also has a trach. He's on a ventilator when he sleeps.
Okay, and I'm going to come right back to you, but Amy, give us that thumbnail for your situation. I have three, and they have invisible disabilities. They have attachment issues. One of them has fetal alcohol syndrome, mental health issues, and my one son does have some physical disabilities.
He has arthrogryposis. Right, and so you have three bio kids and three adopted kids, but man, a Brady Bunch family. Carrie, coming back to you, where Sarah was bold enough and open enough and honest enough, that tension between God, are you real, and if you're real, why isn't my life better? Yeah, I think for me, when my son was five, I talked about this in the book, I kind of had an unbucket list. You know, you have your bucket list, the things that you want to experience in life, and as a special needs mom, I had an unbucket list, things I didn't want to happen. I would look at other families and say, I really don't want to experience that, and it was seizures. And actually, what, 12 years ago, at the time of this recording, my son had a brain surgery, and a week later, he had a four to six hour convulsive seizure that they couldn't stop. And I remember just, like, looking back at my life, and I was raised in a Christian home, I became a Christian early on, but I think along the way, I started to believe that God's love for me meant that he protected me from bad things happening.
Sure, that's very true. And, you know, that I could earn it, or, and I remember at that seizure, I thought, but God, I've been, we've been so faithful, you know, the week of my son's diagnosis, my husband turns to me and says, well, if not us, then who to raise a child like this? Like, we have faith, we have good support, we have a great church. But somehow I thought that because I had been faithful that it negated any future suffering in my life, and boy, did it hit me hard, and I began to doubt that God loved me. And, you know, when your prayers don't get answered, when God clearly says no, you just, you wrestle. I think about Jacob wrestling with the angel and just, you know, and Sarah wrestling in her closet. And I think one of the things that I've come to realize is God's love is so multifaceted in how he shows it. And I just have to have that open posture that Amy talks about and find it in different ways. And I experienced it just differently.
It just wasn't what I thought it was going to look like. Yeah. And we touched on this last time, but that idea that in our limitations of emotions and our way to process things, it does feel like it's punishment.
What have I done more to deserve this? And I think he's saying that's not the equation. You know, this is going to be something you're all going to be learning from, and it'll deepen your relationship with me if you let it.
And that's really that point. Amy, the shaking of the fist at God. You guys are so brave to say this, but I don't ask that of a lot of guests. Tell me your weakest moment with the Lord. Well, when you adopt, it's not a surprise, right?
Like you don't get a surprise adoption. So one of the struggles I had was, Lord, we prayed so hard about this each time we made this decision and felt like you let us here. And now it's just so hard.
I remember a lady saying to me, and they tell the story in the book, she comes up to me and says, I just can't wait to see what that's going to do in your family. And I slapped on my good Christian girl smile and went, yeah. And I laid on my bed and I bawled my eyes out and I said to God, what have you done? I mean, that same day, my daughter had been expelled again from school. I mean, I'm kind of not stressed by that anymore.
It's kind of a norm for us. And I just thought, what have you done? I'm just like, I've done this, God, and what have you done? And one of the things that I felt like God continues to show me is, Amy, you're so focused on the destination. If we can just get ourselves a little bit together, you're forgetting your companion, which is Christ, who walks through us in all of this. You know, I would think, and correct me if I'm wrong, you know, where you and your husbands are connected. You're carrying so much stress in such a load that it becomes pretty easy to go at each other because where else do you go?
You can't do that with the kids. And so it becomes a convenient target with each other because you love me. So you want to hear this is the day I had and you are and you get into it. And how do you say how do you manage that?
Do you start a conversation with your spouse? OK, honey, I'm about to vent. It's going to make you feel really bad because I'm not happy right now. And I need to let this energy out somewhere. And it's going to come at you. I mean, how do you get ready for that or is even that thoughtful?
I mean, it's just like nobody wants to go. I think you get what I'm saying. Sometimes there's a I did not handle that so well.
So let's backtrack and go at this a different way. Yeah, there's some apologizing. And I think it's it's understanding that he does.
He's my ally. Like, we're in this together and we're certainly better together than we would be apart. And so there have been times that we've gotten to arguments over the most ridiculous things. And I think it's asking that deeper question.
OK, why? Like, what is it? What's the real thing that's going on here? Yeah. Is it grief? Is it frustration?
Is it anger? And then we have actually done that where we've said, OK, let's back up five minutes and start. Let's start over.
Let's just restart this conversation. Sarah, I understand you have a observation, I guess I would call it, about not overlooking those joyful moments that come. And again, you could be so buried in life that you don't. And, you know, all of us have that potential to not see God moments or joyful moments. But you're on the beach, I think, in this story and something joyful happened. What was it?
What did it teach you, more importantly? So we were walking on the beach and it was the first time our youngest son with disabilities had seen the ocean. And I love the ocean. And so his just eyes lit up and it was just you could just tell something miraculous was in front of him. But he was struggling to walk through the sand. And my he was eight at the time and my oldest son was 12. My oldest son is just very athletic and he just bounded into the ocean. And I was constantly calling him, that's far enough, come back. And my youngest son, who's eight, was almost like a one year old where we had to stand and hold him because even a light wave would throw him down. And eventually he got bored because there's only so long you want mom to hold you in a foot of water. And so he wanted to go back to the room. And my oldest son came back and he said, oh, watch this. And so they laid in the surf and let the waves take them. And it was my son had said, he's like, if you just let the waves do the work or if you let the waves, I forget exactly what he said, but if you just let the waves take you back and forth, they'll do all the work.
That's what he said. And it was just like God was just saying, see, if you just let me do the work, if you just relax and let me do it, I'll take you to and from everything. And the joy of that is one of my favorite pictures of my boys. And I can just see the joy in it. And my oldest son, who was 12 at the time, taught us such a valuable lesson that my husband and I were focused on the awkward gate, the struggling through the sand.
Is he going to have fun enough? And we just needed to stop and take in the majesty around us, the waves, the boys laughing. And I could have missed that. Yeah, that's so true. And I love that. That's one of the most pleasurable experiences I have is hearing my boys laugh together. You know, in another room, if they're messing around or whatever they're doing, they're just happy. It just warms my heart.
And that's got to be true, certainly. Yeah, it's almost like God was just saying, just lift your face off, just lift it up for a second, look around you. And I just realized I needed to focus on the joy. How about that thought of our Father in Heaven having that same sense of joy that when he sees his children laughing, I think. Amy, turning that corner a little bit for you, because again, you're dealing with more mental stresses with the kids, not so much physical inability or disability.
That's got to be somewhat of a struggle. I think even in the book, you referenced how attachment disorder, the children can learn to play the spouses off one another. Just again, for a peek into that, because it's so brutally honest. Describe that experience where the kids are setting you up against your husband. And it's interesting in a survival mentality that they learn to do this at a very young age.
Right. It's really common in kids with attachment disorder to target the nurturing caregiver, which is typically the mom. So an example in our home could be I could have a raging child wanting to physically harm me. And then dad walks in the door and they turn on a dime. Hi, dad. And it's like night and day. So my husband has never fully seen all the behavior I've seen. And I'm very grateful that he believes me. I've had mom say that they had to put a camera and then their husband would watch the camera and go to get the full story, get the full story. Probably unbelievable.
Unbelievable. I think the struggle. Dave and I have always been a great team and we have six and we have to be a team. One of my personal struggles was I'm kind of the punching bag in some ways and he's not. And I'm kind of jealous sometimes that he doesn't get that. And he carries different things than I do. You know, he hears all that I have to tell him about what we're walking through.
So I had to kind of come to terms with, OK, we're on a team together and yeah, I'm getting the brunt of some of this abuse. But he's still believing me, at least, you know, some parents, some people don't have that. I think that's where you get a lot of marital discord when the husband's in divorce. The husband's like, I don't know what you're talking about.
This kid's a delight right now. You're the problem. Yeah, you're the problem. And honestly, if I can say even from marriage. That's spoken over us moms with kids like this a lot from church and friends and mother-in-law's like, you're the problem.
This kid is. And that's really hard. That's really hard. And it makes you feel shameful and isolated. So I think the thing that helped me a lot was knowing Dave's on my team and being honest, but being OK, that he didn't have to experience all of that. And, you know, and we've been to therapy and we do things together and we have a very strict rule that when we go out together, he takes the phone call from the babysitter of all the bad things that happen and does.
It's like, is it what happens at home? Don't tell me because I am immediately stressed again. That's good. So that's really things that we've that he's walls we've been around me built around me, that he takes the brunt of some of that because he can hear all the bad things and go, OK, where I'm like up all night worrying about all the bad things.
Let's end here. What can the church generally and Christians generally what can they do that's helpful? And then maybe mention things that aren't so helpful, like little phrases we like to say.
And, you know, I think you have some examples of that. But let's just, you know, again, let's just open that up and you guys have at it both the positive things that we could do. Churches, what could churches do to help accommodate special needs children in all facets, mental, physical.
And then what are those things that we say that could really just take the legs out from under you? I think the biggest thing is listening to the families. And also, I think it's so important to educate your entire staff, not just the buddies who are helping the kids. Because you do have families that come in and maybe, you know, their their disabilities are hidden. Or, you know, I've I've come across parents that they've said, yes, my child has, you know, level one autism. But I just didn't tell the workers at church because I just wanted to see how they would handle it. And I think it's important for there to be education across the board on all levels.
Because, you know, I have a 19 year old son who's teaching first grade boys and he needs to know how to, you know, he obviously has some level of understanding with his brother, but he needs to know those things. And I think the one thing that's not helpful is God won't give you more than you can handle. That verse is taken out of context. You get that one quite a bit. God won't give you more than you can handle. I can imagine that. We'll come handle it for me then. It's sent with the right intention. Does it throw salt in the wound?
Right. It's like, I don't I can't handle this without the Lord. So, yeah, we have an elder at our church when we first received the diagnosis. My husband's a deacon in our church and they asked us to come in and tell us about nobody knew the disease.
It's rare. And so we went in and we talked to them and I had one elder specific. All the elders had us come together. But my husband had said they said, what can we pray over? And the first thing out of my husband's mouth was our marriage, because over 85 percent of marriages ended in divorce with Duchenne. And that's what we read at the time, how true it was, whatever.
But it scared us enough that we like just pray over our marriage. And I have one elder that will come up to me and he puts his hand on my shoulder and he said, how are you doing? I'm like, I'm good. Fine. You know, just fine.
And he's like, how are you doing? Right. He wants the truth. He wants the truth. And that's just it. And he's present.
And he doesn't want the fine. He wants to know. And he will say, how can I pray for you this week?
And it is a week to week thing. Yeah. And I think that that is I know someone is there.
I can say, OK, well, we have this doctor's appointment coming up or whatever that might be for the week. And I know he's praying over it. And that's just knowing that there's people in our corner and it's not superficial.
Not that everybody is not that people are being superficial, but he wants he wants the nitty gritty. Yeah. And that makes you feel seen.
It does again. Yeah. He cares. Yeah.
Like Amy said, it's just being seen. Right. Yeah. Yeah. Well, I could talk about this for quite a while.
Give me another hour. I would start with saying adoption is wonderful. Foster care is wonderful. If the church is going to encourage it, they can't leave families behind the amount of families that stop going to church because their kids are acting out. We did an episode on the podcast about church.
The stories I got broke my heart. And I have I know them. I know that you can't first of all, you can't put it on the prayer chain. You don't want to share your kids trauma because that's their trauma and it's personal stuff. Right. Right.
So you can't. So most people just see a kid that's acting out to come to a mom like me and say, what do we need to do for this child? I don't even know what to do with this child half the time. So what I think is important and Carrie said, this is don't first of all, don't judge behavior. Second of all, be a support for I don't think we want the whole church to know all our business. But if we could have a small group of people that we could go look, can you pick up the prescription?
Can you come sit at the park with my child so I can drive in my car and cry for an hour because I really don't want to do this anymore. Just a small group of people that hear our stories and look past the behavior. And I think that is really important. A lot of the moms that have the kids kind of kids I do, they've walked out of church. Yeah. Think of that. And maybe a portion of that group walk away from the Lord.
Right. Our church does a buddy program. And so we started a disability ministry and we have people we assign two volunteers to each child. And so these children know there are two volunteers and they switch and we are like, OK, so this is what makes them awesome. And here with my son, like when he's grinding his teeth or he starts to click, you might want to dig in or take him to the sensory room or something like that. We tell them what to look for. And when we pick them up, don't immediately say, well, they hit so-and-so with a crane or they weren't listening.
Give me the checklist. Yeah. It's just saying I enjoyed your child. Yeah. Wow. The power of that.
Yeah. And then my husband and I have 45 minutes to actually focus on the word and to worship. Well, you guys are saying so many strong things and so many right things. And, you know, in many ways, with our foster outreach, you know, one of the things that we encourage Christian couples to do is look for opportunities to do respite.
That's a big word. We didn't understand what respite meant before we got into foster care. It means like giving relief to a foster family so they can have some margin.
You know, it might be shopping for them, doing their laundry, just something. And I think the data, as we've looked at it, if there's five respite care families that come around an adoptive or a foster family, they typically will be successful in that endeavor if they have that much help. But think of that. That's a load.
That's a lot saying we need five families to help us raise this child or these children, right? Well, listen, you guys have done a stellar job. I'm just sorry we're wrapping up. We're going to have you come back at some point and talk more about this.
There's so many golden nuggets in here. And our hearts do go out to you, not in a way to show you disrespectful sympathy. But, man, God chose you for a special assignment.
Gives me tears thinking about it. Thank you and your husbands for doing it and for doing it well and for teaching the sighted of us to do it better and to know God deeper. So thank you for being here. Thanks for having us. And let me turn to the listeners and the viewers. Man, what a great resource.
The Other Side of Special, navigating the messy, emotional, joy-filled life of a special needs mom. And you've heard their hearts and you know what they're saying. So if this is something that would help you, get ahold of us. If you can make a gift of any amount, we'll send it to you as our way of saying thank you. If you can't afford to do that, we'll send it to you anyway. And trust others, we'll cover the cost of that. It might be a friend or somebody in your church. Maybe a church should hold a few of these copies so they can give them to families who come in that have special needs kids.
That would be a blessing. And there's many ways you can use this. So get in touch with us.
As John mentioned, you know, we've been doing this for over 40, almost 45 years now, right? You're not going to surprise us if you need help to talk with a counselor, etc. Just get ahold of us. Our number is 800, the letter A in the word family.
800-232-6459. We're stopped by the show notes for all the details. And coming up next time, you'll hear some simple but really transformational marriage advice from Matt and Lisa Jacobson. The thing is, is people look at a wonderful marriage and they say, wow, that couple got lucky. They fell in the hole backwards and just had a great marriage.
But that's just not the case. A wonderful marriage comes out of making many, many everyday choices that say I love you rather than choices that say I love me. On behalf of the entire team, thanks for listening today to Focus on the Family with Jim Daly. I'm John Fuller inviting you back as we once again help you and your family thrive in Christ. God wants true disciples, ones that think like him, talk like him, walk like him, disciples that bring shalom to the chaos of this world. Pursue that path with the RVL Discipleship series. Bible scholar Ray Vanderlaan will give you the tools to understand the Bible more deeply and inspire you to be a passionate follower of Christ. Watch the first episode at rvldiscipleship.com
