Parenting a Child with Down Syndrome – Shauna Amick

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Shauna Amick has always been a pro-life advocate for more than years. She currently works in radio marketing for Joni and Friends, and before that she worked for a crisis pregnancy center.

In 2005, Shauna was surprised to learn during her third pregnancy that her child would have Down Syndrome and a life-threatening heart defect. Shauna’s doctors immediately and repeatedly recommended termination, which she refused to do, relying upon pro-life verses she had learned from the Bible.

Today, Sarah is a healthy, spunky teenager. She’s happy, full of God’s love, and is the first to volunteer to pray at church. Her language skills are poor, but people are blessed by her prayers. Shauna praises God for Sarah’s Down Syndrome because that’s who He made Sarah to be and she brings glory to His name.

 

 

 

I had it out with the Lord. Can I say that? I said, what happened to the, that that bread I asked for why did you give me the stone? and about four miles into my walk, I really heard the Lord say you were asking for a stone. I gave you the bread. Welcome to the focus on the family broadcast, helping families thrive John I wonder how many people know that today March 21 is world down syndrome day and which is a day of celebration and global awareness, officially observed every year by the United Nations since 2012. And this is a growing global campaign to advocate for the rights inclusion and well being of people with Down syndrome. But ironically, we completely disregard pre-born babies who have been identified with this particular disability. It’s estimated in the United States that 67% of pregnancies with a down syndrome child in an abortion. 67%. And in some European countries it’s as high as 90%. Any abortion is tragic. It’s heartbreaking that so many in our culture that we’re looking at these precious lives saying doesn’t matter. Not valuable even though these are babies created in God’s image. Absolutely. It doesn’t mean there’s not hardship, there will be. But how do you become more like christ right there within your own family? Here’s the thing, john God doesn’t make mistakes. Um there are going to be obstacles in a world that is full of sin and has fallen away from God. But we can quickly um see those imperfections in someone with Down syndrome or some other physical or mental disability and maybe we judge them or we pity them for the condition they’re in. But God often does his greatest work through our weaknesses, right? And uh where there is a mass God has a greater plan of purpose that’s far beyond what we can imagine. And that’s been the experience of our guest today. And I’m looking forward to discussing this issue with her. Yeah Shauna is an author, speaker and disability rights advocate. She’s the director of radio marketing for johnny and friends. The ministry founded by our good friend johnny Erickson Tata and Shawna is the mom of three and she’s a contributing author to a book called Real Families. Real needs a compassionate guide for families living with disability. Chyna’s personal story is captured in a little booklet called My baby has a disability life giving questions and answers and you can learn more about these resources. When you click the link on your screen, Shauna, welcome to focus on the family. Thank you for having me. I’m so happy to be here. Yeah, we’re recording in southern cal and our Good Friends here and Ambassadors conference room actually it was nicer than to make this available to us. Shauna. I understand you’ve been a pro life advocate for more than two decades and you also worked with pregnancy resource centers by the way. Let me give that unabashed plug for pregnancy resource centers. You want to get involved in your community. Call them up and see how you might volunteer. Help them. Certainly support them financially. The PRC’s deserve that kind of local support. And they’re in your community. I am almost sure that they’re there for you. So you were doing that and in 2005, you’re pro life convictions were tested. How are they tested? Well, I ended up being pregnant with my third baby and went in for what I thought was going to be that routine ultrasound where you get to find out if you’re having a boy or girl. And I’m I’m confessing that was about the extent of my vision for the day. I wanted to know what color I was going to be painting the room when I got home. And as I laid on that table and the ultrasound technician took longer and longer to look at this baby growing inside of me and then settled on my baby’s heart And stared at the ultrasound image of Sarah’s heart for close to 45 minutes. And with my untrained medical eye, I knew we had a problem. You didn’t know quite yet. I really had no idea what the problem was. But I knew that I had I had had two Children already. I knew we didn’t take this long doing an ultrasound and I knew enough about the human heart to know that there were supposed to be four chambers in it. And Sarah had no chambers in her heart. It was a circle with a little piece of tissue that would kind of float around every time my heart beat. And I asked the technician, when are you gonna tell me? And she said, oh I’m going to have the doctor come in and see you. And the doctor sat in front of me and and told me that my baby had what was called a navy canal heart defect. And that that specific heart defect was a red flag for down syndrome. She then told me about all the other markers that she saw through ultrasound and immediately offered an abortion. And at that point I couldn’t really speak. I just shook my head. No. Let me ask you though. In that moment when when a medical professional, I mean obviously you’re going through trauma and you’re getting all your fears confirmed and things you may have even had Mommy’s intuition about right. And then they say, yeah, we would highly recommend an abortion. What flows through your mind at that point. Uh this is gonna sound ridiculous. But I was kind of sitting with my arms crossed and I literally pinched my arm. It just didn’t feel like reality. Uh I don’t know that I could tell you in the moment. There were a whole lot of thoughts going through my head. Other than no, but after the fact, very soon after I left the office, I just started praising God that I knew the truth of scripture, that all life is sacred. And when when jesus says, let the little Children come to me, he means all the little Children, right? The ones in the wheelchairs and the ones with intellectual disabilities. Um after the fact It was actually psalm 16 that God gave me and carried me through the next five months of that pregnancy. Specifically the boundary lines have fallen for me in pleasant places and I have a delightful inheritance and you know, I would drive by. I mean, we were in the hospital all the time after that. Throughout the rest of the pregnancy, I became a high risk pregnancy. Sarah was born on a beautiful june morning and just quickly started dying as they told me because of her heart defect and it would be six weeks until she was strong enough to have the surgery itself. And then another two months of staying in Children’s hospital in boston recovering. And so every day I would see other moms with healthy babies, no heart defect, no disability. And God would just remind me, the boundary lines have fallen for me in pleasant places. To you know, the difficulty in that is that you obviously clung to those scriptures. Some moms would have struggled, perhaps even in their faith to say, Lord, why has this happened to me? Why have you done this to me? I mean, I can only imagine all the things that might be said, Some of that just comes from obviously their pain. So it’s not unjustified. But it’s kind of that tough question to say, how could you heavenly into God rather than away from him? Wow. I guess I would just say Grace, God’s grace allowed me to lean in because I’ve certainly known other folks who chose the opposite. Yeah. But you know, if I go back to that moment where the doctor said in cases like these, we we recommend termination and I said, no, she pressured me right there in that moment and um she said, are you sure this is not going to be easy? And that’s when I feel like the Holy Spirit gave me a voice and I heard the Lord say to me, I didn’t come to make life easy. I came to make you holy Yeah. But even in that, I mean, there’s there’s that immediate faith response that you had, which was a good step in God’s direction. Did you? At some point in that journey began to say, I’m not feeling close to the Lord, you know, did you have moments where you were struggling? I had moments of struggling with Sarah’s diagnosis. I certainly had a lot of fear ah that on this side, I think what was I afraid of? Right. Um, but what was I afraid of The unknown. Uh, and I think would be and I think even that is part of how our culture kind of indoctrinates us to think that people with disabilities are somehow less valuable because what what would be there to fear in down syndrome? I can say that today, 16 years ago. I was terrified. I didn’t know what this would look like. Um, but you know, the honest truth is that anytime we have a baby, we don’t know what that’s going to look like, right, disability or not. So, um, I’m grateful that it didn’t shake my faith. It totally shook my my core. I can say that. And I had a lot of questioning. Uh, the Lord, why why would he do this to my baby? Why would he do it to me? And um three months later after open heart surgery after everything that she had to go through at in the Nicu in the Children’s hospital. And I was finally told I could bring my baby home. I uh I said, well I’m gonna go for a walk before I put her in the car. That made everybody nervous. I don’t know if they expected me to come back or not. But I had it out with the Lord. Can I say that? I said, what happened to the that that bread I asked for why did you give me the stone? And about four miles into my walk. I really heard the Lord say you were asking for a stone. I gave you the bread and it just about knocked the wind out of me. And I walked in. I said, okay, I’m ready, I’m ready. Let’s go. I took my baby home, I set up her little hospital room right next to my bed and And we’ve been doing life together for 16 years now. Yeah. But yeah, I so appreciate the vulnerability of what you’re struggling with because you know, women are listening right now who are maybe facing all kinds of things that are challenging their faith. It may be a diagnosis of their pre born child and what’s happening and the fears of that. And it might be difficulty in their marriage. It could be a whole host of things. So I I do appreciate that honesty and to the blackness of your heart, we all have sin in our heart. Right? So we’re all gonna have doubts and fears. It’s part of being in this life. But it’s so amazing when we choose faith in christ, no matter what form that takes because I really think it puts a smile on his face when we trust him. You had a couple of experiences that really helped bolster you what you call kind of the, I would call God incidences, coincidences that occur. One was where you were in a fast food restaurant and something happened. What was that? I was yes. Okay. Well, um I had been crying for a good many weeks at that point and I had my two older Children veronica and Gideon Veronica was six and Gideon was four and we lived out in the boondocks. Okay, so there wasn’t a matter of getting in the or going out the front door and going for a walk to see people. I have been kind of housebound uh, living out in the woods with these kids and I just had a little bit of cabin fever and thought, okay, that’s enough crying for for now and let’s pack up and we’re going to go do something crazy and go get some fries right? I packed up the kids and we headed into town and parked ourselves and got our, you know, chicken nuggets and fries and just started being normal people for a moment. And um, I, I don’t know if I lasted maybe 20 minutes and then, I just you know, had another episode, I looked out the window and just started crying again. And um this lady all of a sudden, I can feel her hand on my shoulder and she just tapped me on the shoulder, I looked up and she said, honey, I don’t know what, what’s going on right now, but you know, I just want you to know it’s gonna be okay that my friend and I are praying for you and we want you to know everything’s gonna be okay now, That would have been enough. But when she pointed to her friend, it was a young man with Down syndrome and she had no idea. I mean she knew I was pregnant, she could see that she had no idea what I was crying. That’s amazing. I feel like it’s like the Lord, that’s one of those. Be careful how you entertain strangers, right? They could be angels unaware. Another God incident was listening to focus broadcast. Oh my goodness. Oh yes. That’s when the Lord turned my car into this holy sanctuary. Okay, another day where um, and of course this is, I lived in New England. It’s cold. Right? So again, we’re not going for a walk. What can we do? I got to get out of the house. I packed the kids up. We’re gonna go to the mall. Uh this beautiful God moment where I look in the back seat as I pull into the mall parking lot and the two kids are asleep. Right? That in itself, you know? And so I thought, well, I’m gonna let them sleep, I’ll just listen to the radio and here comes focus on the family. And you know, I’m not quite remembering word for word, but it was something the intro was something like, um have you been diagnosed with an uh, adverse or have you had an adverse diagnosis in your pregnancy? Will stay tuned because this show is for you. And do you know that those two kids stayed asleep for that whole program. So I could sit in the front and have focused on the family minister to me and truly, I truly did feel like that car just turned into God’s Holy sanctuary just speaking to my soul. That’s beautiful wow! Well, what a privilege to be a part of your story and thousands and thousands of others. This is focused on the family with Jim daly. I’m john Fuller and we’ve got Shauna comic with us today and she has contributed to a book. Real families, real needs a compassionate guide for families living with disability. We’ve got copies of that here at the ministry, Just call 800 the letter a in the word family. Or click the link on your screen, Shauna you really identify with an old testament character. I I think those that know the story of Hagar would put the pieces together but explain Hagar her travails and how you identify. Sure, sure. Alright. People are gonna want to read Genesis 16 to get the the whole Hagar story of course. But she’s the outcast who’s just feeling rejected and and far from the Lord. And um I didn’t really identify with Hagar until the night before Sarah’s open heart surgery when um for those first six weeks of Sarah’s life, she had been connected to all kinds of life support and we knew that open heart surgery was waiting for her in the morning. And so I set myself up for this all night prayer vigil in Sarah’s hospital room and right around midnight her nurse came in and started unplugging her from all of these life support machines And of course I was flabbergasted because I had been told for six weeks she can’t survive without this. Before I could say anything. Her nurse picks Sarah up out of her little hospital crib and put her in my arms and said, I think you and your baby should go for a walk. And I was about to ask and she said, just don’t leave the hospital And be back in 20 minutes. And it was all in her eyes. I had 20 minutes before you know, it would affect Sarah’s health not being connected to life support. So kind of like a zombie. Even I went on autopilot down the hall and I got in the elevator and in a very childlike way, I wanted to get as close to God as I could. So I push the top button in the elevator, uh not knowing where I was going to land. I really had not left Sarah’s room for those first six weeks. Well, the elevator door opened and what was waiting for me was floor to ceiling glass windows overlooking the boston skyline at midnight. It’s quite a fascinating scene and I ultimately felt very small like here I am with millions of other souls, all of us needing the Lord and who am I uh and I’m holding this dying baby in my arms right. The only prayer I could squeak out was the name of the Lord. And so I I just said, jesus And I felt in that moment that God said to my heart, I see you, I see you and I see that dying baby in your arms and you know um Sarah still had down syndrome. She was still gonna need open heart surgery in a matter of hours. We didn’t know if she’d survive it. That was the whole reason that that dear nurse let me go for a walk with my baby. It was the only time I ever held her without many tubes in between us. But what changed in that moment as I was no longer the outcast. I was no longer rejected or I did not feel far from the Lord. He saw me right. He saw what we were going through and it completely changed my perspective and gave me the strength to go into surgery the next day. That’s a wonderful story of how the Lord will encourage us. Do you think in that circumstance, do you think the Lord would do that for everybody? And sometimes we just miss it. I mean I tend to lean that direction that he’s there, but sometimes we’re so lacking being in tune with him or even having a heart open tone that will miss those moments where he’s expressing Yeah. Yeah. Well, you know what I always I fully believe God speaks our love language, right? So for some of us it’s words. Other times it’s maybe he shows us something in nature, hand on the shoulder. Exactly, right? And we do need those eyes to see. Um So I mean this is going to sound really very simple, but that’s why we’ve got a stay so close to him, right in the word and in prayer I would have missed it otherwise. Tell us about your daughter today. Oh my goodness, I’d love to. Well it’s what have you seen all those theories you’ve alluded to this earlier that if you know now I don’t have those fears, I you know, it’s not there, what you’ve learned. So that’s what I want to hear. What have you learned. Okay, what have I learned? I have learned the truth of the sanctity of life and believe it or not. Every night when I’m praying over Sarah as we go to bed, I’m thanking God that she has down syndrome because she would not be Sara, she wouldn’t be sarah any other way. So the very thing that completely threw me into a panic is what I am able to thank God for now you talked about princess dancers, right? Um Sarah of course means princess. So she’s my princess and I’ll tell you what that kid can dance. Uh so she loves music. She loves dancing. Her favorite artist is Elvis of course and she does a fantastic Elvis impersonation. So any chance she’ll get, she’ll put on her Elvis outfit and and grab a mic and and do a little dance for us. Uh you know, she’s just um, everything wonderful. She’s got every emotion that everybody else does, which is actually something that maybe somebody listening doesn’t understand folks who, I don’t have friends or family members with down syndrome. Well sometimes say to me, oh, isn’t that great? Your, your daughter has down syndrome. That means she’s always happy, right? Um, which personally, it’s a little insulting because it’s almost taking away her humanity. Like we’ll know she’s a person, she’s got all the same emotions you have. So she’s happy and she’s Sassy and she’s fun and she gets angry just like me. Um, and she loves jesus. In fact, you, you mentioned in the describing of Sarah her ability to pray that she’s a prayer warrior. Again. That would surprise some people because we assume That cognitively that connection may not be strong. But how does she pray? Oh, you know Sarah is 16 years 16 years old at this point. Her language is getting more and more understandable. I of course can understand her, but I’ll tell you what, if there’s ever a chance when the pastor or anybody asks for a volunteer to pray, she’s always going to be the first to volunteer. And there have been plenty of times where the rest of us all we understand is dear God. And then Sarah will just let loose and she is, you know, calling down heaven and at the end, you hear amen Now none of us might even know what she just prayed, but I promise you, jesus knows what that little girl prayed and I think it makes him smile. It’s so awesome. And even for some people to hear what you said a moment ago that, you know, your daughter with Down syndrome that you sound comfortable with, that might even make them uncomfortable that you would be comfortable with that, Right? And I think the last question I wanted to ask you is just with that transformation that you’ve had, moving from what, what has happened to me Lord to acceptance. And then, um, you know, today you wouldn’t, I want to do over. That’s right. That’s powerful. Some people will be totally confused by that. How could you say that as a woman of God? Yeah, Yeah. You know, I think that’s what I always want moms to hear when they’ve been given a diagnosis, whether it’s Down syndrome or any other kind of disability or adverse diagnosis. As I remember from my focus on the family broadcast there. Um, you can do this right. Don’t, don’t let the world tell you that there’s something wrong with your baby. There’s nothing wrong with your baby. God’s hands knit that baby together in your womb. Exactly the way he designed. Right. So, um, I guess if there was any do over, it would just be, I wish I was a little stronger, uh, when I went through it, but certainly wouldn’t change a thing about Sarah and and that’s what I want other parents to know that if they go through that initial, of course, it’s a crisis. Of course, there’s tragedy, of course there’s trauma, right? We wouldn’t be human otherwise if we didn’t have any of these emotions. But once you get on the other side, you’re gonna praise God that your baby is exactly the way God made that baby. You know, Shauna, it strikes me that in this day and age, that mama’s heart for her child, it comes out so boldly in you. And even if in the beginning you didn’t feel it, you know, you had to work through it and I so appreciate that. But that mama’s heart, you think in our culture today with what I perceived to be just an all out war against Children, to be honest with you. You know, they tell young people don’t get married, marriage is horrible and they get married and then the culture tells them don’t have Children, there’s overpopulation. And then if they have one, well, let us kill it for you. I mean, if you think about it, there’s this just bizarre assault on the idea of Children which by the way, we were all one at one time, right? And so that I’m pointing that out in that, you know, when you look at that, it’s just beautiful to see that you can embrace what is and that you can trust in God, and so many of us need to do that more so right with with regardless right as you said earlier regardless of our our situation I’m grateful the Lord trusted me with her. Right. I consider that and honor. Yeah. Um You know if I can speak to the mama’s heart can I just a moment sometimes I’ll have a little child you know a child come up and kind of be staring at Sarah and I I love this one scene where we were at a playground and a little boy not only was staring at her but he finally came up to me and said what’s wrong with her And in that moment my heart was just so tender because I saw this as a teachable opportunity. Um Well you know what there’s actually nothing wrong with her. You know she thinks a little different than you and maybe she talks a little different than you but she loves the slide just like you do. She loves to swing. And you know this little guy, I don’t know, maybe he was five. He he kind of thought about that. He said okay and they played together for the next 20 or so minutes. Um not talking, just go on the swings together, go on the slide together. That was a wonderful gift. I I kind of get the other extreme I can get a little mama bear when sometimes I might have an adult who I think there’s something wrong with my child and you know, shame on me. I should have the same attitude and and see it also as a teachable moment, but I’m just gonna I think this is the time for confession on this. Focus on the family. Yeah. And there’s nothing wrong with her. You know, I mean, I’ve had moms uh kind of pull their Children away from mine as though they think they’re gonna catch down syndrome and that just breaks my heart. So I guess if there’s anyone in the minivan right now listening to this, um think about that mom of of a special needs child and give her a little grace and mercy and realize that her child is just as valuable as yours. That’s a good word for all of us actually, Shauna, this has been so good. Thank you for sharing your heart lessons learned and the good things. I hope you know the listeners and the viewers, I hope you’ve caught the heart of what we’re talking about today, that if you’ve received that adverse diagnosis or maybe something else is happening in your life that is adverse. We have carrying christian counselors who can talk with you and even refer you to a counselor in your area if you feel that is your next step. So call us nothing’s going to embarrass you or us. We’ve heard many, many things over 44 years and this is humanity in all of its goodness and all of its darkness and what you’re going through is certainly something we’d love to talk with you about. We also have this great book by johnny and Friends and I know Shauna, you’re a contributor to that content that is called Real Families. Real needs a compassionate guide for families living with disability. And as you said, Jim johnny is kind of the main author and editor for this great resource and as always, we are a listener supported, viewer supported ministry here and focus on the family. If you’re able to make a contribution of any amount today, we’d love to have you join the support team, help us make broadcasts and resources available to families in need. It’s very simple to donate on the phone, 800 the letter a and the word family. Or just click the link on your screen. And when you make that gift, we’ll send a book to you as our thank you for being a part of the focus on the family ministry team and on behalf of Jim Daly and the entire team. Thanks for joining us today for focus on the family. I’m john fuller inviting you back as we once again help you and your family thrive in christ

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